Friday, November 8, 2013

Living My Life Transparently

I've been struggling a lot the past month. More than most, but not the most. I haven't been blogging because I've been in and out of the hospital and it really takes a lot of energy to blog. But I have been posting on Facebook to keep my friends and family updated because it's a whole heck of a lot easier to do that than to call 327 people (or however many it is on any given day) to update them of what each stupid doctor said that day, especially when I'm on so many pain meds and feeling so lousy and can barely lift my phone. So I post a quick Facebook update or picture of my tube falling out or something to that affect. 

However, there is always a RISK in this. Because not everyone wants to see all the medical drama all the time. In fact, most people don't want to see it at all. So my posts get hid from their timeline and I am erased from their life. Or I get repeated messages in my inbox either telling me that I post way too much about my medical life or giving me suggestions for a miracle cure. Both of which are mega annoying. But I need to update people and that is an easy way to do it. So get over it. Really. It's my Facebook. You knew I was sick when you became my friend because I am only friends with people who I actually have relationships with. So I'm sorry. This is my life. I am sick. Very sick. Sometimes more sick than others. It is a BIG part of my life. I will not apologize for it. And I should not have to.

I am also a Christian. I also love music. I also love my friends. I also hate hospitals. And hospitalists. And pharmacies. And ignorant doctors. And ER's. And people who do not understand me. And I do not understand my friends that say that they want to be my friend and understand me and are so supportive to my face but then I hear that they said x, y, z behind my back because they really don't understand me. Please ask me questions to my face. Please let me be my own advocate. Please try me. I have all the answers and they do not contradict themselves. I promise. Please do not call me a hypochondriac. Or tell me what I'm telling you is impossible. I will tell you why it is. I know the science of why it is even. This is why I live my life transparently. Because I want to be understood so that I do not get hurt as often.

But sometimes I feel like living my life so transparently is what ends up getting me hurt in the first place. Like if I didn't offer up so much information then nobody would have anything to hurt me with. Recently I spent time with a really, really good friend who lives her very sick life more like this...all closed off and hidden like...and ya know what's interesting??? We were talking...and she gets hurt by her friends for the same things that I do too even though she shares very little if any information. So how do we both live our lives very differently and share very different amounts of information and both get the "same shit on different days" from different friends about our chronic illnesses (which is the same by the way)?

I was driving home from visiting this friend and another friend with the same illness and a doctors visit in Indianapolis this week and the song "Iris" came on my I phone and the chorus just cut through me like a knife and I realized part of it spoke to my friend and part of it spoke to me in how we live our lives and why we do what we do and why it hurts so much. The lyrics are:
"And I don't want the world to see me
'Cause I don't think that they'd understand
When everything's made to be broken
I just want you to know who I am"
 And all in one chorus (because music speaks to me so clearly), in a song I've heard at least a million and a half times, it's like the skies opened up and it was clear to me why my friend stays so quiet about her health conditions and why I'm so vocal about mine.

She doesn't want to say anything because she doesn't think anyone will truly understand what she is going through and know who she is. Me on the other hand. I'm so vocal because I want people to know who I am and I don't want there to be questions and I want people to understand me. I don't want the world to see me as a stigma or this weird thing in the corner that has to be handled with care or treated differently. I also want people to realize that I know my limitations and that I should be invited to everything or treated the same and if I can't do it I will say no, but please don't assume I can't do it unless I tell you I can't.

If you are a doctor and I come to you telling you a list of symptoms please don't tell me it's impossible. If you are a pharmacist and you are out of my medicine and tell me you are going to order it and have it the next day please do so and don't forget and not have it for a week later and then it's out of stock nationwide and it's so hard to get it's not even funny. If you are a doctor and get a note from another doctor that doesn't particularly like me that says I'm not well adjusted and have anxiety and on and on and have issues with having so many chronic illnesses and walk into the room and tell me I haven't done ANYTHING since being a teacher 3 years ago please do not tell me that I have a mental health disorder and need to learn that just because I have several diseases that the diseases do not have me.

You do not even know me. None of you do. None of you know what it's really like to live like this. Nobody knows what it's like to get tired from walking to the bathroom. Or to have to carry 15 pounds on your back all the time for your food. Or to get stares from people because of your food. Or to have to carve out around 10-20+ hours a week for doctor/nurse/treatment time. To take 19 pills plus 17 syringes full of meds every day. To not be able to eat without throwing up and to get most of your calories through a tube in your small intestine. Eating really is something that is missed so much. Especially with Thanksgiving coming up.

But I am still happy. I am still me. I still am pursuing a master's degree with a thesis option, slowly but surely. I will finish one day. I still run a support group on Facebook. I am an active member in several other support groups. I am in a wonderful C-group through my church. I "attend" church weekly online. I have friends I meet with regularly for community encouragement and support. I try to find volunteer opportunities and do good deeds when they are available. I wake up every day and get out of bed, which many people with my amount of conditions can't say they do.

And this is why I live my life transparently. This is why I post medical stuff on my Facebook page. Because I want people to know no matter how much crap I go through (and my friends are consequently going through because we have the same issues and there is no mass awareness yet of our conditions). I want people to understand me. I want people to stay up to date with what is going on. Most of my Facebook friends are chronically ill as well so it isn't a big deal to them. And the rest of them are supposedly my friends so I would assume you would want to know what is going on as well. I know it gets overwhelming to read about. But imagine what it's like actually living it. Just sayin'.

I don't know why I felt so compelled to write all this out. And it doesn't really feel tied together to me. But it just seemed like I had to get it out there. That I will say what I want to say when I want to say it because I want to live my life transparently. I don't care what people think of me. I want to bring awareness to these stupid conditions. I want people to understand what living with chronic illnesses is like. I want people to understand that we don't just lay in bed all day. That it's not all fun and collecting money from the government. I don't think that anyone will ever understand me completely (or anyone with a chronic illness for that matter). But we are all broken. And I just want you to know who I am. So I'm going to continue living my life transparently. For me. And for my friends who don't feel so comfortable doing so. So we can all be understood a little more. Hopefully.

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