Saturday, September 13, 2014

Advanced Chronic Illness Seminar: Syllabus, Topics, and Terms

Just as a little joke/play on words, I thought I would do an academically themed blog post of everything you have to know and understand if you are diagnosed with one, a couple, or several chronic illnesses since school just started back for me on June 20th!.

 I have made it a full 3.5 weeks of school without being absent, I was tardy once and it severely upset me more than the teacher but it was because the neurological portion of my diseases made it so I could not find my keys and I was late to a hospital orientation. But I've made it to 2.5 whole weeks of school without being absent...did you hear that people? After 331 days of bed rest, I am really doing this. I am throwing my list of 17 chronic, congenital, genetic, debilitating disabilities out the window and I'm turning a new leaf  and going back to school, carefree, and the living is easy and I don't have to worry about being sick anymore...because I'm all better..because I'm back in school.

Wait, what?

Can I really do that?

Can I really just wake up one day and decide that the chronic illness life isn't for me anymore and I want to have a different life, a different story, a different career, a different schedule. Does it work like that?

Last time I checked the definition of CHRONIC ILLNESS...that would be a big HELL NO! The definition of chronic illness itself is an illness or disease lasting 3 months or more, by the US National Center for Health Statistics. Chronic illnesses generally cannot be prevented by vaccines or cured by medication, nor do they just disappear.

So if you want a life parallel to the life of chronic illness you needed to know and work and understand how to make the two lives work TOGETHER. A job that is seemingly impossible most days. Because most days...I can't even make my basic life of wake up, take a shower, get dressed, do something productive, work with my 17 chronic, congenital,
debilitating disabilities, let alone add anything else.

The hardest part about living a "parallel life" in addition to living your chronic illness life, is that if you try to live a parallel life you are going to run into SO many people that just SO do not understand at all. And it's majorly frustrating. This week has been the epitome of that in so many ways. I do not care how educated you are and how much you think you are aware of different cultures and people and minorities and situations. Or if you even hold a degree in a health care profession. That does not mean that you understand what it's like to live and function and achieve when you live a life of chronic illnesses. 

You are not aware that when you are showing up to class that you are showing up, every day, on time, and not complaining with a smile on your face and a good attitude. This is despite the fact that your leg muscles may hurt because of putting pressure on them and standing on them for a long time when you have significant muscle damage. You feel as if you are about to pass out because you aren't getting enough energy intake fast enough through your formula or you are standing up too long so your blood pressure dropped too much. Or it's difficult to lift anything or carry your feeding pump backpack because your back hurts so bad. Or you feel so incredibly exhausted you just feel like there is no way you can get out of bed at all...but you know you have to...because you are only allowed to miss 2 days the whole semester and it's still the firs month. Or the fact that it took you 1.5 hours just to pull and take your meds and pack your feeding backpack and make sure you have everything with you that you could possibly need in case of emergency for the day like towels, extra extensions, meds, alcohol swabs, etc. Or you can't even really see because your blurry vision is kicking in. Or you are so nauseous you can barely think about anything else. Your life is not just waking up, rolling out of bed, putting on some clothes, and showing up to class like so many others. You have to fight just to make it out of the door every morning. And I mean fight hard.

In addition, to those around you in the non-chronic illness world you have to deal with the mental and emotional thoughts that you are going through at the same time. You have to come to terms with yourself of why this is happening to you? How much in your life will change? You feel like no one understands you, like no one could possibly know how difficult it is just to do simple tasks.You probably throw around in your head ideas like you can't handle all this,what happens if your family is all gone--then who will take care of you, about how scared you are, and on and on. For me, usually at least, the emotional side of chronic illness is almost way worse than the physical side.

Now to get on to some of the parts of what are required to actually know how to live and thrive with chronic illness. First, you've got to know what you need to carry with you at all times in case of emergencies and keep supplies in mind that need to be ordered and kept up on for maintenance. For dysautonomia, you've always got to have water, salt, compression stockings, fold up chairs, and those towels that you can soak in water to make them cool in the summer with you so you don't pass out. For Ehlers-Danlos, you've always got to have braces for every part of your body available in case you dislocate something. For celiac, you need to always know where the nearest gluten free snacks are. For ulcerative colitis, you need to know where the closest bathrooms are. For mito, you've gotta have your wheelchair, access to some muscle relaxers, and have stuff in your car to set up for a quick nap. For gastroparesis/tube feeding, you've gotta have your feeding backpack all loaded with formula and water/gatorade, syringes for meds, meds, flushing syringes, towels, extensions, tubie pads, and changes of clothes. You always have to plan ahead for what you might need. And even over plan and have more stuff than you will ever need. But you'll get used to it once you are sick for a while. 

The most important thing about getting a chronic illness diagnosis is that in some ways it's a relief because you are finally finding out what has been debilitating you for so many years and causing you so much grief. But at the same time you realize that the rest of your life is going to be ruled by your illness, or illnesses, and instead of buying cruises and dream houses and having kids and getting married, your life looks completely different. Now, instead, you are buying blood pressure machines, supplements, syringes, gauze, tape, saline, creams to prevent itching and fungal growth, gas to go to and from appointments, more supplements, prescriptions, braces, wheelchair parts, lights for your IV pole, and on and on. 

You will be spending the rest of your life waiting on something. Going somewhere. Trying to figure out the next step. You will go to so many different doctors and therapies and treatments. You will have regular appointments with PCP's (primary care physicians), cardiologists, gastroenterologists, endocrinologists, neurologists, rheumatologists, geneticists and metabolic doctors, orthopedists, electrophysiologists, physical therapists, occupational therapists, speech therapists, chriopractors, massage therapists, accupuncturists.You will learn so much medical terminology and information you could earn a medical degree. I guarantee that you will know more about your medical condition than your doctors will, especially if they are just pretend specialists, or specialists that aren't really all that specialized. You will have every test there ever was known to man and more. You'll get blood drawn all the time, CBC's, CMP's, UA's, pregnancy tests like all the time just because you are of child bearing age but seriously who is sleeping with this mess and how would this mess of a person find the time or energy to sleep with anyone anyway--even if she wasn't infertile already, x-rays of everything multiple times, CT Scans, MRI's, skin biopsies, stomach muscle biopsies, small intestine biopsies, thigh muscle biopsies, organic acid testing, colonoscopies, esophageal studies, swallow studies, stress tests, EKG's, echos, EEG's, sleep studies, and on and on and on. And you will never get all the answers you want. But you will still want to keep trying and waiting. Your schedule will be insane. 

I think the most important thing for those without chronic/invisible illness to realize is that you are lucky, for right now. But you never know when it will be you. It comes without warning and takes over your life and you have no control over it. And you can't give it back. You've just got to learn how to deal with it. I know I've told this story before, but when I was taking adaptive PE in undergrad my professor was describing the difference between those who had disabilities versus people who didn't and the class called them typical or normal people. She said that you can never say someone is typical or normal. You should always describe someone without a disability as temporarily able bodied because you never know when they will be disabled and not normal or typical anymore. Cocky little me, president and captain of everything, straight A's, 3 jobs, running all the time, involved in my church, 21 year old self was saying in my head "nah, that will never be me, I'm way too healthy" and I was on permanent disability 5 years later. Yeah, it totally happened to me. Fast. My whole life was turned upside down and inside out. And I am learning to thrive with it, and use my life now for education, awareness, advocacy, and testimony. But boy was I wrong when I said it couldn't happen to me. It can happen to anyone. At any time. So be on your toes. Enjoy the ride while you can. And treasure every moment you have on this earth as if it is your last. Because it may very well be. We never know what will happen. If chronic illness does happen to you though, learn to be grateful for the little things, get to know some others with chronic illness, I guarantee your life will be better because of it. Those of us with chronic illnesses are pretty kick ass, if I do say so myself! 

I hope you enjoyed your crash course in chronic illness living. I also hope you never have to use it! :)

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