No one tells you

I think something that no one tells you when you finish school, whether it be college or university, is that although the world portrays you as full of potential and choice and opportunity, there will be a struggle and it may come close to breaking you. Yes, you made it through years of grueling school work, late nights with little (if any) sleep, and caffeine fueled classes. Yes, you studied endlessly for tests that you may have just hardly passed anyways. Yes, there were the struggles to make friends and keep friends, oh, and hopefully find a relationship though this is a whole other ball game. Yes, you’ve accomplished all of this and it amounts to a walk up to the front of the room, accepting a diploma or certificate at graduation, but this is only the beginning. No one seems to mention how truly terrifying it is to hand in those final assignments, reach for that diploma and all of a sudden have a new life.

For years we’ve been students, sure we may have worked part time jobs throughout the year, maybe even full time during the summer months while school was out, but do we really know what full time employment means? We’re so used to school and its culture that it’s a complete shock to be thrown into “adult” adult life and be told “here you go, go get that job, reach your full potential!”

Suddenly there’s a timeline. If you’ve been out of school a short time, there’s the pressure to find a job, and a good one…and fast! Then, as time passes, you get desperate to start paying off the student loans and take some job completely unrelated to this “full potential” everyone keeps throwing around. If you decide not to settle for something that you’ll most likely hate and hold out for something good, then it all comes down to time. It becomes a race to get a job before this indeterminate period of time gets determined as being “too long” and this “full potential idea” goes slowly down the drain.

How long is too long? What job are we supposed to expect to get right out of school with minimal experience? What if the experience we have from part time jobs is no longer what we wish to do and becomes irrelevant in the search?

I guess you could say that these are the questions that have been keeping me up late at night. Questions surrounding my future, both professional and personal. Ideally I’d work for myself, set my own schedule, be my own boss, and be fully accountable both to and for me. Although many people want this, I’m sure, I can’t seem to accept the fact that those same people are never able to achieve it. I can’t seem to accept that I may be one of those people who hates work every single day, doing a job that doesn’t fulfill me. It’s a terrible thought, but one that costs me hours of sleep each night as I toss and turn, trying meditation apps to calm my busy mind.

I guess the point is that no one prepares you for this. No one explains that this is what can happen, no matter how successful you may have been in school or in past employment. No one tells you how nauseating the stress can be as loans pile up and there’s no way to pay them or to get a job that will get you anywhere close to where you want to be. All we can do is search and attempt to find the path that we are meant to be on and hope that opportunity and good fortune line up in such a way that allows us to follow this path. No one tells you any of this, but maybe this is part of some twisted rite of passage that all young graduates must learn for themselves and struggle through, as a sort of ‘paying their dues’. We must continue to have hope and optimism that one day soon we will find our way, having figured it out for ourselves.

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Vicious Cycle

Taking the T3s to help with pain and the Gravol to help with the nausea from the T3s and the coffee to try to stay awake on the Gravol to make it through the day. 

Choice

Choose to focus on what you can do, what you can eat and what you have to lose instead of the disabling symptoms, the food you miss out on and what you have and will lose because of your illness

How Celiac Disease helped me find the one

I know  I’ve talked before about how tough dating can be when you have chronic illness, as well as strict dietary restrictions such as being gluten free. This is true, and it’s exceedingly difficult to explain to people the importance of the diet and the nature of the consequences if it isn’t followed to a T. Having said this, I struggled through the dating scene for a while, meeting various guys that I either just plain didn’t like, as well as guys that seemed decent, until the Celiac conversation came up that is.

The thing about this disease that eventually helped me find the man I know I’m meant to have a future with (who can say how long, I’m not psychic after all) is that it showed me who was really IN this with me. I met a guy on a popular dating app and we went on a date (at a restaurant of my choosing so I knew the food would be safe of course). Now, we talked and hit it off and I believe my  CD came up on this very first night. He seemed confused, like most guys I’d tried to explain it to, but also appeared open to my needs as well as respectful which was a huge thing for me! As the weeks went on, all the restaurants we frequented he made sure to check that they had gf options before we ate there. Then, when it came time for me to meet his family, he had shopped and read up and prepared me a gluten free, celiac safe meal! Those of you with celiac disease and experience cooking gluten free will appreciate how impressive this really was- I certainly did!

As the months went on, I would occasionally become glutened accidentally from restaurants that claimed to be gluten free etc (you know the deal) and this was when I worried.. Of course the symptoms aren’t always pretty and definitely not fun, but what did he do? He spent lazy days and even lazier nights in with me while I was too sick to go out. He did laps to and from the microwave, heating and reheating my hot bag, gave back rubs and dispensed pain meds at various intervals… sound chivalrous yet? Well wait for this, he held my hair back while I threw up in the sink….multiple times. Winning moment for me? Far from it. Winning moment for him? Yes, because he truly did win my heart no matter how cliche that might sound.

I guess the moral of this story is that my illness helped me see early on that he truly does care, that he has a protective and comforting side and that he really will go to lengths to make sure I’m healthy, safe and happy. He may not understand the extent of my pain, but he’s learning, trying to prevent it and there for me when it can’t be prevented. With a life long illness, we look for qualities like this in people we want to be with, because the illness will always be a part of the relationship, whether we like it or not. Having someone who can deal with it while helping me deal with it is huge and something I think can be rare and know for a fact, is hard to find.

He cooks me gluten free meals daily and checks the menus of places we go to eat. He comforts me when I’m sick and relishes in the rare days I’m actually feeling good. He’s stuck by me through this, and I have a pretty good feeling that he’ll stick by me through whatever has yet to come. And this, is how I think that my Celiac Disease has somehow helped me find my one.

Yes, I know that rhymed, but it seemed kind of fitting, right? No? Oh well, I tried.

My purse, my mobile pharmacy, my love.

Common knowledge says that you can usually tell a lot about a woman by the contents of her purse, however if someone were to successfully empty all pockets, baggies and hidden compartments of my purse, they would think I was a pharmacist running some sketchy side business. As a woman with various medical conditions- Celiac Disease, Asthma and Hypermobility syndrome (to name a few), when I am actually able to leave the house, I do so with literally everything I might need.

Unluckily for me, the other day while unloading all my stuff from my car, coffee, keys, bags and sunglasses in hand, I dropped my purse, spilling its contents out all on the driveway. I’m sure the neighbors didn’t appreciate the language that came with this hassle as I dove to collect the pill bottles that were now rolling towards the street. This moment was when it really hit me- how much I rely on meds to get me through my daily life, and how terrible the contents of my purse must look to passersby who know nothing of my conditions and daily pain levels. We’ve all seen those television shows where the housewife pops 2 Adavan while sighing as the kids rush in after school… thoughts? “What a pill popper!” well folks, some of us have to be and trust me, it isn’t fun. Between the asthma inhalers, NSAIDS, antihistamines and various other prescriptions, my purse holds my life and health inside. Oh, and I forgot to mention my trusty TENS machine that I use when the other pills don’t seem to help with the pain.

My life, whether it’s work or play, requires constant monitoring and preparation to make sure that I always have what I need on hand. It’s hard enough holding down a job and social life with chronic illness, could you imagine forgetting the purse that holds all of your medications at home? I don’t have to imagine because I’ve done it, and trust me my friend, it’s terrible. So yes, my purse resembles a mini pharmacy and yes, there’s definitely more pills than cash or makeup in there, but that’s the life of a spoonie. My purse, my pharmacy and the way I keep my life on track.

Practice what you preach, or at least make it look like you’re trying

I think sometimes people are just too hard on themselves. Why is the world so stressed these days? Because we schedule too closely, eat too quickly, text too often, and as a result, stress ourselves to oblivion. Does this make any logical sense whatsoever? No. Do we continue this sickening pattern every single day regardless? Yes.

It really makes you think. For me, I think about it a lot and it ironically makes me more stressed but that is probably because I don’t do it properly. I try to ignore my phone, but am always waiting for a call. I try to slow down, but then guilt myself about doing “nothing”. In the end what does this really get me? I think in the end I will have developed an ulcer and become a total wreck that struggles to even leave bed because I’m so crippled by stress. If you think about it this way, you’re making yourself stressed about doing nothing or more accurately “taking it easy” (well-deserved of course) to then an inevitable future demise where you will then be unable to do anything but “take it easy”. Then where will that leave you? The answer is even more stressed because you won’t have any choice but to feel guilty about not taking it easier sooner and now being forced to take it easy when you should be busy liking your work (or trying anyway), loving family life (hopefully you don’t have to try hard for this one) and being so hypnotically caught up in this wonderful thing called life that you have no time left at all for stress.

I know it’s all easier said than done. Obviously…As I’m currently sitting here beside a pile of readings that haven’t been done, feeling guilty that instead of tending to them I’m here on my computer writing, but writing is my passion, it’s what I love to do and I have to learn to feel less guilty for allowing myself that time. Do I feel guilty that I have all this work piling up as we speak? Yes. Do I know I’ll have trouble getting to sleep tonight because of worrying about having enough time tomorrow? Duh. But do I believe that that will be my reality forever? Not at all. Or at least, I really hope not. Thing is, we’re all pretty deep into the technology now and it feels like there’s no going back at this point. Since you’re reading this blog I’m going to assume that we’re all fairly tech-savvy or maybe a better term would be tech-somewhat-capable people and most of us turn to our devices for just about everything. You do realize that there’s this thing called the library that has real books about Celiac Disease and all that jazz, right? Just kidding, those books are dirty and other people have touched them and us blog-appreciating people don’t need none of those germs now do we? Too cool for school over here! But seriously, we all just need to put thought into what we’re doing and how we do it. I won’t use the term “mindful” because I know that is frowned upon in the world-wide community (more or less of course) but we really do need to be thoughtful (is that a better word?) of how we plan our days and what they really consist of. Let me ask you this: When you’re lying on your death bed however many years from now, will you wish you had spent more time at the office or at lunch with that friend that you pretty much hate but go out with because she’s “really not that bad” or you’re “not really in a position to be losing any friends at the moment” you “really don’t need the drama”? Chances are you’re going to regret not spending enough time with the people who truly enrich your life and who made you feel at peace under all the stress. You may even miss your alone time. True extroverts probably won’t understand that one but for people who enjoy the solitary way of life, I got you.

Moral of the story is that there is so much hope, even under all the stress, we just need to allow ourselves the time to find it. We need time to accept that we can’t do everything at once (we shouldn’t have to by the way!) and that life is about so much more than scheduling. Our health is depending on it and our bodies need us to listen and understand that.

How is this related to Celiac Disease, you ask? Truth is, it relates quite strongly actually. Yes, I may have gotten carried away with analogies but hey, you’re still reading to this point right? Caught ya. Celiac Disease is an autoimmune disorder and although everyone can experience their symptoms differently, many people (myself included) find fatigue to be a huge problem. On top of my busy days and the stress, I feel even more stressed because I’m so fatigued and take even more time completing tasks than most people. Thing is, I know that I don’t HAVE to feel this way but I am ALLOWING myself to feel this way. People who suffer from fatigue, pain, whatever lovely symptoms you may have from celiac disease (or any illness for that matter) need to put less pressure on themselves. We all need to remember that yes it may sound cliché but, we ARE only human. Sorry to tell you folks, but it’s true. We aren’t some crazy robots designed to work 3000 hours a day. If you’re anything like me you have trouble accepting that and yes, you have to be tough to have an illness like Celiac Disease, but let’s settle for tough shall we? No need for “robotic” to become a desirable personality trait now.

I know they say practice what you preach and yes, I try. No, I’m not perfect or even remotely good at it yet but I figure that at least understanding the theory of it is a good start right? Who knows, I mean, you wouldn’t want your doctors or engineers to have that kind of philosophy but I admit to being a work in progress. A hard working person with celiac disease that forces me to work just that much harder. So from now on I will attempt to master not only the theory, but the method as well. Maybe someday I will be one of those zen people for whom nothing phases them and they just walk around like cool cucumbers all chill and shit. Wishful thinking, that will never be me, but I can only try my best. I hope some of you will try it with me. Remember, Celiac disease can be hard on our bodies and minds, we don’t need stress added to the equation only making it that much harder.

Judge me if you must. 

I find it interesting that with every single person I encounter and grow closer to over time, they each have their own individual view about my celiac disease and the fact that I live 100% gluten-free. I know you’re probably thinking that this shouldn’t be so surprising. Everyone is different after all and you can’t expect everyone to have the exact same opinion. But hold on a second, the key question here is…did I ask? Did I ask you whether you understand the incredible pain I’ve been in for the last 4 year? Did I ask you for your medical expertise on the gluten-free diet and whether its “actually necessary”? Well, unless I blacked out or had some sort of lapse in judgement, I don’t believe I did ask you.

I think everyone living gluten-free has encountered this at some point since their diagnosis but it still baffles me every time as to why people feel that its their business or that I’m somehow in need of their obvious knowledge (yes, sarcasm) of my health issues. Maybe I’m too sensitive, but am I really? I guess it’s  all a matter of opinion and yes, some people look at gluten-free diet as a fad, but the thing is, I’m not on a gluten-free diet, I’m living a gluten-free life. The health and weight loss experts always talk about the difference between diet and lifestyle and I’m sorry to say that I’ve finally accepted that they’re right. It applies to living gluten-free too. A diet implies that it will end at some point or that you’re eating a certain way to reach some sort of short-term goal, but in reality, health is a long term goal and it truly takes a long time for your body to heal from gluten. I never thought that my lifestyle would change so drastically over the last 8 months or so since my diagnosis, but “you gotta do what you gotta do” as they say. This can be a major life transition and who needs to be given opinions (uneducated opinions might I add) about how you need to take care of you. 

I guess it’s just another annoyance, but sucks for the people who judge because they will never have an excuse to eat those delicious gluten free brownies we all have stored away on the top shelf. HA