No, I’m Really Not All Right, But Thank You For Asking

Lately, I have been finding myself in somewhat of a predicament of a social nature. A common question in our society is to ask “how are you doing?” Of course, whenever someone asks me that, I respond with “I’m fine,” or the more cheeky “well, I’m upright…” On the one hand, it has made it so that people don’t worry about me. However, it has also made it so that people don’t really realise that I am not well at all. On Facebook, you frequently see something like this talking about invisible diseases:

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From sodahead.com

I do think that this explains it all right, but it fails to mention that it’s not just difficult to explain to someone what living with an invisible illness is, it’s downright impossible. My boss, unfortunately, didn’t quite get the memo when I called in the day after my first IVIG because I felt like I had been hit by a Mack truck. “I really need you to come in, do you think it might be at all possible?” Buddy, you try getting 25 grams of pure protein in the form of blood products pumped into your veins and let me know how you feel afterwards. It doesn’t help that I had knee problems going into it. I couldn’t even drive myself home, and I went home and slept. As a matter of fact, I slept all through the day I was supposed to work. I really didn’t feel too hot afterwards.

As a matter of fact, it didn’t occur to him that this is a real serious issue until I told him that I can’t work Tuesday evening because I have a pulmonary function test and CT scan starting at 3 in the afternoon. He made a joke about double-checking that my brain was still there, then got bug-eyed when I mentioned that it wasn’t for my head but for my lungs.

“Is it really that bad?”

Why yes, as a matter of fact, it is. Having pneumonia 5 times and bronchitis at least a dozen times throughout your life will do some damage. 

I’ll admit, I’m scared of the CT scan. The x-rays to make sure the pneumonia I had in April was gone were “clear as mud” to quote my primary care doctor. She wasn’t sure if it was yet another round of pneumonia or scarring from the previous two rounds. So, I got put on antibiotics. Again.

Funny how she’s prescribed them to me 7 times since the beginning of the year and never thought to check the status of my immune system.

But I digress. 

The other thing that I’m scared of is sounding like a whining little wimp when someone asks me how I’m doing and I give them an honest answer. Which today would have been “well, my right ear is clogging up again and I’m worried about it getting infected again because it might mean a hospitalisation for IV antibiotics since I just got off a round of super antibiotics for that same ear. I have a raging headache. I’m exhausted. My throat hurts. And I impaled where my upper lip meets my gums with my toothbrush last night and I’m in a disproportionate and increasing amount of pain. I’m also concerned about that getting infected too. But other than that, I’m fine, thanks for asking.”

But here’s the thing: I’m not wasting away to nothing, I’m still standing, still working, still able to form coherent sentences. I don’t look sick. And people really don’t believe me when I say I’m not feeling well. Except for Lord Imp, he believes me.

Sorry folks, but I have not only one but two major life processes that straight-up don’t work. Just because I’m not looking like I’m wasting away doesn’t mean that I’m fine. As a matter of fact, I’m far from it. But I keep on pushing. And why? Because I’m strong, and I take pride in that strength. I’m proving to myself that I have no limitations. Trust me, when I tell you that I can’t do something, there’s a reason for it. It upsets me greatly to have to turn things down because I’m not feeling well. But you wouldn’t know that, because all you see is someone who looks healthy and is turning you down.

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Suck my tiny little lady balls

I really wish people would do some research. Yup, they still think I have something with an extra-long polysyllabic name. Fucking use Google. Ignore the several sites that say that I have a good chance of not making it to my 40s, they’re ominous and I don’t like thinking about it. I’m not looking for your pity, I’m just looking for you to understand what I’m going through, even if it’s just a little bit.

Sorry folks, but I’m really not all right.

 

I Can Never Be…

…a food blogger.

I know what you’re thinking, “but Lady Imp, you are all about being whatever you want to be! You don’t let anything get in the way of your desires and dreams!” Yeah, I don’t let anything come between me and a strawberry pie either, but that doesn’t mean I’m any good at making one. And whenever I make something that is actually edible bordering deliciousness, it always ends up looking like this:

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Yes, this is what my homemade Hot Pockets looked like this morning.

Fortunately, I’m not a stickler for looks, and neither is Lord Imp. What’s important to us is that it doesn’t taste like it needs to be washed down with the horrid taste of a dark stout to get the comparatively poisonous taste of supper out of our mouths. And nine times out of ten, that mess coming out of my oven is pretty damn tasty.

Except I could never put a picture of it up on a blog. Unless I’m making fun of myself.

And then I go trolling All Day I Dream About Food and Maria Mind Body Health for recipes and I am instantly jelly. Look at those cakes! OMG, that lasagna looks perfect! And I set off on an endeavour to fix the perfect meal that looks like it came straight out of Leave it to Beaver. Two hours later, I look at the steaming pile of mess on my plate, silently sob for 15 seconds that it looks like a heap of dinosaur poop, and then grab a fork and dig in because let’s face it, I’m hungry and that dinosaur poop smells damn tasty.

I’m sure it doesn’t help that my view on recipes is somewhat akin to the Pirate’s Code:

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Welcome to the Black Pearl

But I don’t think my dislike for following instructions really has anything to do with the fact that my cooking is less photogenic than me on a bad hair day. I like to believe that has more to do with the fact that I’m just not artistically inclined. We’ll forget that I have been known to sculpt dragons out of Sculpey clay for a minute here, and focus on the fact that my cooking never comes out looking the way it does in the pictures, or even remotely close to it. I just lack the knack to make anything look picture-perfect.

But sometimes, it’s just damn tasty. And in the end that’s all that really matters. Because while it looks like dinosaur poop on my plate before entering the abyss that is my digestive tract, it’s going to look like human poop when all is said and done.

Yummy.

And never ask for my recipes. I steal them from other sources. Do a Google search, you’ll be fine.

 

 

Medicinal Anthropology

So, I finally got most of that reading assignment in 1491 done last night, and there was one big thing that struck out at me. At one point in our lives, we are all taught that disease played a big role in the European’s conquest of the New World, but this book put it into a whole new light. It also made me ask a lot of questions:

  1. What exactly killed all these people? We all know about the smallpox epidemic, and that there was measles and influenza in there as well. We all know that due to the high rate of exposure in Europe, the conquerors had relative immunity to them and therefore weren’t susceptible to the diseases. But we sequenced the genome of the plague a few years ago, so why is this considered a non-issue? Why is it not important for us to use the same techniques to identify the bacterium and viruses that took these victims? We know roughly when many of the epidemics took place, so theoretically we should be able to start poking around after remains have been dated. In my opinion, knowing precisely what it is that killed who, and more specifically what strains, is just as important to our history and to anthropology as knowing what caused the Black Death.
  2. Were the native populations suffering from some kind of immune issues? I think they were, and here’s why. Mann brings up a very interesting point in the book, that it is not in the evolutionary benefit for bacteria/viruses/whatever to kill their hosts. They want to keep their hosts alive so that they can mutate and continue to infect, thus continuing the species. So then why on earth did such a large number of natives die of these diseases? Some estimates are as high as 90% of the population succumbing to disease, that just doesn’t sound like good Darwinian form to me. Kill 9 out of 10 people, the remaining 1 is now immune, just doesn’t sound to me like a good idea for the continuance of the species. Conventional theory is that the populations were so susceptible due to the simple fact that they had never been exposed to the microbes, but I honestly think that it is a gross oversimplification. The book goes on to give a rather good basic description of the immune system for non-bio folks, which was when the light bulb went off in my head: what if the native populations were immunodeficient? What if the problem wasn’t that the natives lacked the appropriate antibodies to keep away the smallpox, they lacked the ability to make antibodies to fight the virus once it showed up? The virus wiped out everyone unable to form these antibodies, everyone with these immune system problems, leaving only those with the strong enough genetic makeup to go on and continue the species.

I really have a strong urge to go sequence some native genomes. Many PIDDs have known genetic markers, and have known mutations. I wonder if we were to sequence these genomes, we would find that the native populations had more issues going on than being the “virgin soil” that Mann calls them.

Who wants to help me write grant proposals?

Major League Fail

In my stalking of my Twitter feed (because I’m less than interested in doing homework right now), my attention was brought to an article about Major League Baseball donating $300,000 to Amyotrophic Lateral Sclerosis organisations on the 75th anniversary of Lou Gehrig’s “Luckiest Man” speech.

Not gonna lie, I LOL’d reading the article.

Before you brand me an evil person and send me away to be tried as a witch and burned at the stake, let me throw some numbers at you. If I’m reading the article correctly (and I’m really hoping that I’m not), it looks to me like this $300,000 is going to be split among four different organisations. That’s $75,000 each. To the MLB, that’s the equivalent of digging in the sofa cushions for change to throw in a bucket carried by a Boy Scout. 

To add insult to injury, according to mlb.com, the minimum salary of a Major League Baseball player is $500,000 for 2014.

So what you’re saying, Major League Baseball, is that research and aid to organisations in support of Lou Gehrig’s Disease is worth less to you than the guy sitting on the bench batting sub-.250 with 50 ABs and 10 Ks. I cannot think of anything more insulting.

“Oh, but all the teams are looking to bring awareness to the disease! Putting our faces out there will bring in more donations, raise awareness, and allow for more focused research!” True story, but let’s face it folks, people knowing about ALS doesn’t fund research. People knowing about the disease doesn’t pay the salaries of researchers, doesn’t buy equipment, doesn’t help fund programs to help those fighting the illness. It doesn’t build ramps, doesn’t help provide care, and doesn’t pay for special fun outings.

Money does. Thanks for the $300,000 but seriously, that’s nothing. The benchwarmer makes more money than that. And your little donation of what is less than minimum wage in Major League Baseball is, to put it bluntly, fucking insulting.

So here’s the challenge I present to you, oh big-wigs at MLB: I challenge each and every one of the 30 teams to donate $600,000. Prove to people suffering from ALS and their families that they are worth more than minimum wage. EACH. AND. EVERY. TEAM. Stop  being insulting jerks, with your pocket change and your smiles, thinking that this insulting donation is good enough. Truly show that you are committed to ALS research and to finding a cure, and to bettering the lives of those with it. While your executives are sitting in their luxury boxes, sipping mai tais and watching the game, how about throwing a little extra cash the way of these organisations who you claim to support.

Actually support them. Put your money where your mouth is. And pay Lou Gehrig more than minimum wage.

Curious, Or Just Plain Nosy?

I admit, I have a very difficult time with people who ask questions about my condition above and beyond “what’s that?” Despite what people may think given that I have a blog, I am a very private person. If I want to discuss my life and its goings on with you, I will bring up the subject. And just because I have brought up the subject does not give you the leeway to ask a million questions that I find to be personal in nature. Especially when I hardly know you, rarely see you, and most certainly do not consider you to be close enough to warrant responding to your interview requests.

I had the pleasure this afternoon of working with a girl who will readily admit that she’s nosy and asks a lot of questions. And I felt like I was being interrogated throughout my entire shift. It was incredibly uncomfortable, and it all started with what I felt was a rather inappropriate question about my job prospects up north. I responded with a hard and cold “I don’t know if I’ll be able to work this fall,” which to me was a signal to end the conversation and move on. To her, however, it was an invitation to ask me a million more questions about my life, on everything from my schooling to my medical conditions.

I wish I could be straight-up rude, but to be honest, I don’t think she would have gotten it. I heard at least three times this afternoon that “I know, I ask a lot of questions,” like it’s completely all right for her to be cornering me and getting information on my private life. I felt like I was talking to a two-year-old caught up in the never-ending circle of “why?” Every time I put down what I thought was a definitive “this is the end” answer, I got asked another question. I would find myself giving a one-word answer and turning my back to her, returning to feigning work by scanning the headlines on Yahoo.

The fact of the matter is, it’s not a topic I’m really comfortable discussing with yet, especially not with strangers, and even more especially with people who in the process of trying to find out more information end up questioning why I do things the way that I do. That right there is something that irritates me above no other. I do things the way that I do because that’s how I want to do them. I do not appreciate my methodology being called into question, even if it’s a simple “why?” We’re not discussing why I do things for work here, which is one instance where I think asking why is appropriate. We’re talking about my life here, how and why I handle things, how and why I manage my conditions and how and why I maintain my health. Those are questions that I absolutely do not appreciate in any way, shape or form.

Thankfully, I don’t work with her very often – as a matter of fact, this is only the first weekend I’ve worked with her in a month and a half. I was warned about her perpetual questions when I first started there last summer, and was told that she’s just an inquisitive person, don’t worry about it. And to be honest, it’s not like I’m concerned about gossip or anything like that. I just don’t appreciate being put under a microscope like she does, asking questions, disguising her nosiness as simple curiosity. Because she’s not curious. A person who is curious would be asking about the biology of the condition or how many people have it, not how I plan on continuing with school or why I may have to quit my job.

I think that my biggest issue is that I feel like I can’t work with her without my privacy being violated. And I know that I have to say something and that I should, if I ever want to make it through the shift without being asked 100 questions. I know that the opportunity will come up tomorrow, there’s no way she can go without getting into people’s business. But I’m not sure how much good it will do.

All I can do is try.

Something Close to Normal

So here I am, snuggled up in my bedroom at my mother-in-law’s house. Baby Imp is sleeping in her Pack-N-Play at the foot of the bed, and I am glancing over to my right to my copy of 1491: New Revelations of the Americas Before Columbus thinking that maybe I should get to reading since I have two quizzes and a writing assignment on the first five chapters due a week from Friday.

In reality, I’m hiding out from the daycare kids.

I’m really trying to continue living life as close to normal as I possibly can, but I can’t help but be just a little more worried about getting sick when I’m around kids. I’ve been around these kids quite frequently for years and I haven’t died yet (obviously), but there’s a part of me that wonders if the next time will be what does me in, if the next illness will land me in the hospital, hooked up to a dozen machines and clinging to life.

I’ve been told on several occasions that I shouldn’t even be alive, and that I’m incredibly lucky. How much longer before my luck runs out?

Despite this fear in the back of my mind over coming down with something that as of late has bordered somewhat on paranoia, I am bound and determined to live life as normally as possible. Which, for the most part, involves being around people, and involves being around kids. Now, I will readily admit that I’m not a huge fan of children who are not my own, and to be honest the PIDD makes for a convenient excuse to excuse myself to my bedroom to avoid the chaos.

Granted, so does the homework that I should be doing instead of blogging.

But despite my determination to continue with life as though nothing has happened, there is still this little voice in the back of my mind that occasionally whispers “this isn’t a good idea” like a seductive temptress looking to get me to agree to something that I shouldn’t be doing. She has Laura Bailey’s voice (Fullmetal Alchemist Laura Bailey, not Skyrim Laura Bailey) and finishes off with a gentle kiss to my earlobe. I know that I should proceed with caution, and yet I press on, barreling forward without a care for what may come, bound and determined to not find myself living in a bubble of fear. Laura Bailey’s sultry voice leads me on because that ethereal temptress knows that this is what I want, what I yearn for, what I fight for, this normalcy that evades those of us who are immunodeficient, the ability to simply go out and to live. And I let her lead me, not because she has presented me with an offer that is just too good to refuse, but because I know that by not living, I am giving in. Giving in to the stigma that surrounds these disorders, that we live in a bubble, that our lives are lived in nothing but fear.

I refuse to allow the fear to envelop me, but I will admit that there are times when I wonder if what I’m doing is the right idea, if walking around the grocery store has the potential to be lethal. In the end, I know that the benefits outweigh the potential risks, that almond milk and cheese just aren’t going to buy themselves. But as I am wiping down the handle of the shopping cart with those Purell wipes grocery stores are now offering with some level of ubiquity bordering on fanaticism, I wonder if it is all for naught. Why wipe down the cart handle when someone in the baking aisle could possibly cough in my general direction while I’m fuming over the fact that once again they’re out of coconut flour, possibly transmitting whatever microbe is residing in their air passages and making me sick as a result?

In the end though, I have to go out to the store and buy that coconut flour, partly because I need it, partly because Lord Imp looks at me funny when I bring it home, and partly because I just need to be normal. And as far as I’m concerned, wiping down grocery cart handles and running the risk of another case of pneumonia are perfectly normal.

Sidenote: I still haven’t downloaded Dawnguard to the computer ever since Lord Imp noticed that Serana was voiced by the same person who did Lust. I just can’t look at that character the same anymore, and I now avoid the quests on the Xbox as well *shudder*.

 

 

 

To Be or Not To Be…Disabled

To be, or not to be? That is the question—
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And, by opposing, end them? To die, to sleep—
No more—and by a sleep to say we end
The heartache and the thousand natural shocks
That flesh is heir to—’tis a consummation
Devoutly to be wished! To die, to sleep.
To sleep, perchance to dream—ay, there’s the rub,
For in that sleep of death what dreams may come
When we have shuffled off this mortal coil,
Must give us pause. There’s the respect
That makes calamity of so long life.
Hamlet III.i.57-70
 
Today I read a rather interesting article on the BBC News website discussing putting a label on disability discrimination. Which got me to thinking about a question that has been in the back of my mind since childhood:
 
Am I truly disabled?
 
By law, yes, as a matter of fact I am. The Americans with Disability Amendments Act of 2008 broadened the definition of the term “disabled” to include anyone with anything that can “substantially limit one or more major life activities of such individual” and further goes on to define “major life activities” as, among other things, endocrine and immune systems.
 
So, the good news is, I am protected by law.
 
But it does beg a question above and beyond laws and definitions: am I really disabled? The law thinks so, but the true measure of disability, in my mind, is whether or not I perceive myself to be disabled. I will admit that it’s an idea that I have struggled with for most of my life, this “to be or not to be” of sorts that people like me battle with on a daily basis. We are just fine on the outside, we look normal, and go about our daily lives with as much normalcy as possible. But inside, we are malfunctioning, a strand in the genetic code has tripped somewhere, and the entire system downstream has been thrown off. 
 
I don’t always feel good, but normalcy is incredibly important to me. I don’t like people perceiving me as being disabled – that only leads to discrimination, pity and misunderstanding. But at the same point in time, I do find myself having limitations, and I have to use the disability to explain them. While people like me are no longer in a legal Catch 22, I think we often find ourselves in this personal one of sorts, debating between carrying the label of “disabled” around our necks, or casting it aside and dealing with the consequences.
 
Although we have all been taught that Hamlet is discussing suicide in his soliloquy, I think that it has equal congruence with this situation. Do we sit alone and suffer in silence, living in our houses and rooms, afraid to go out into the world and experience life? Or do we get out, go and do things, despite the dangers and the spears of infection that can pierce us and ultimately put us back into bed? In my opinion, seclusion and fear are comparable to death just by virtue of the simple fact that it is not living. So, do we cave fully into the idea of the disability and isolate ourselves from the world out of fear of getting sick, or do we grab life by the horns, go out and just be normal?
 
Do we live or die?
 
Of course, Hamlet paints suicide as the more courageous and noble path, and in my mind he is debating between emotional death and a physical one. But he does later bring up an interesting point when he addresses that even physical death will bring sleep and sleep brings the evil thoughts that haunt him. To Hamlet, either course of action is an evil, and it is up to him to chose the lesser of the two. In the end, (SPOILER ALERT…and if you came across this because you’ve Googled the play because it’s been assigned in your high school English class and you’re too damn lazy to read it yourself…stop being lazy and read the damn play) Hamlet chooses life and lives to see the end of the play, even though it’s a life full of mental anguish.
 
I think this is a valuable lesson for all of us living with these so-called disabilities – go out and live life to the fullest. Don’t let a fear of illness or low blood sugars or getting hurt or even ridicule stop you. In doing so, you are choosing death. Go out and live. Smell the roses. Kick around a soccer ball. Make friends. Fall in love. Start your own company. Do whatever you dream, whatever your heart desires.
 
Just LIVE.
 
I don’t consider myself to be disabled. The question you need to ask yourself is, do you?