Thursday, May 30, 2013

Like a bruised reed

The day 2 prompt for the 30 days of posts (which I didn't do yesterday because I was exhausted and in a lot of pain) was to pick a quote and use it as inspiration.

Well, I have 2, of course I do, it's day 2, I like things to match up like that, and I have 2, period, I have 2 quotes that have gotten me through this. And surprise surprise they are both Bible verses because what is gonna get you through being this sick better than some Bible verses?

The first one is Psalm 139:14. This first translation is the NIV version, "I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well." Now here is the Message version, "I thank you, High God--you're breakthaking! Body and soul, I am marvelously made! I worship in adoraiton--what a creation!"

Now, let's take a step back, take a deep breath and look at this. People, I know I'm sick, trust me I know better than any of you. I am real sick. I also know that my god the most High God made me this way and he thinks I am fearfully and wonderfully made, He thinks I am marvelously made. He also said that I am to worship Him in ADORATION for his WONDERFUL WORKS in creating my body and soul. Soul maybe, but body, seriously. Come on. I am writing this from the infusion center at my doctor's office where I have to (get to--I begged for this for a long, long time) go every week and get a 4 hour infusion of IV Saline because I don't absorb fluids properly. Every 5 weeks, I get to get a 4 hour infusion 2x per week because my Remicade and Saline can't mix for some reason. I am constantly taking medications, having side effects from those medications so I get put on new medications to counteract the side effects and they add more medications for those side effects. I can rarely get out of bed for more than 2-3 hours a day comfortably, although I usually do end up out of bed more than that, I just regret it later. And my calendar is full of doctor's appointments and tests, not social events. This verse is telling me I am supposed to PRAISE God for knowing I would turn out this way? Praise Him for thinking I am breathtaking from my bed every day at 27 years old?

This verse was really hard at first, really hard. I read it and got mad at it and cried at it and screamed at it. I said to God, you wrote this verse for those pretty cheerleader type girls that have their lives together, not for me, not for someone like this, not for a 27 year old that is as sick as me. Not for an 11 year old that has the same condition as me. Not for a 16 year old that's been in the hospital for 8 days now with an unrelenting migraine so bad she still can't take sunglasses off and they've tried every drug in the book. Not for an entire family that has this stupid disease. Not for a husband and wife that both have different forms and are having to learn to care for each other while they are both extremely sick. Not for a young mother who just wants to be able to get out of the car and play with her kids at the park. Not for any of us. This disease doesn't discriminate, it attacks at any time, and for no reason, and there is no awareness, so there is no treatment and God wants me to praise that? Seriously.

Let me tell you how I can justify it. Let me tell you why I praise Him. Number one, first and foremost, because I met all these people that I talked about above. They are awesome people, and without them I don't know where I would be in this fight. Also, because I've learned to love advocating for invisible illness rights and I've learned a lot about how to advocate for myself. I've learned that without God with me in this, I have nothing. So I praise Him. If one door closes, I praise Him in the hallway til the next one opens. I praise Him for knowing I was going to be like this so that He could provide me with valuable tools prior to the diagnosis to equip me to fight. If I wasn't a special ed teacher, I wouldn't know all about ADA laws. If I wasn't a strong willed personality, I wouldn't be able to advocate for myself. If I wasn't a Type A personality, I wouldn't be organized enough to keep everything together to track my labs, heart rate, blood pressure, etc. I praise God for giving me these traits. I praise God for trusting me to live in His will with this illness. I praise God for allowing me the knowledge to know that healing doesn't have to come on earth. This is why I can praise Him in this.

The second verse was given to me by my favorite teacher in high school (really ever). She brought me to the church where I first really understood what it meant to be a Christian. She sat with me on her back porch many times working through many things. When it was yearbook signing day, I of course wanted her to sign my yearbook, in it she wrote the verse Isaiah 42:3. The NIV says, "a bruised reed He will not break, a smoldering wick He will not snuff out. In faithfulness He will bring forth justice." The Message version says, "He won't brush aside the bruised and the hurt and he won't disregard the small and insignificant, but he'll steadily and firmly set things right."

Now I don't know for sure how He is gonna set things right for me, but I do know He is faithful. I also know that I am bruised and hurt. I do know that somedays, I'm about to break. And it's a little glimmer of hope for me to think about on the days when I am about to break. That he will bring justice to me one day. Because God always keeps His promises. 

Wednesday, May 29, 2013

Because sometimes God doesn't "heal"

So November is Invisible Illness awareness month and WEGO health gave out prompts for bloggers with invisible illnesses to blog for 30 days about. Well, actually they gave out about 60 prompts because there was a choice every day and then there were 2 free days so minus 4 plus some extra prompts so about 60 prompts. I got the prompts but never got to the writing because let's face it, the last month of classes does not provide the most free time, especially for someone with a chronic illness.

But summer you guessed it...I'm going to attempt to get through tons of these prompts this summer even the alternate ones. They are great prompts and I often have trouble figuring out what to write about.

So Day 1: "Why I write about my health"

Well, ain't that a complicated answer?

How about a top 5 list?

1) It's cathartic. When I'm having a horrible hard to understand day, it's nice to be able to come here and type what I feel and not have to look you in the face when I'm "saying" it, even though I know most of the people that are reading it. It makes me feel better.

2) I hope someone reads this and gets help with their diagnosis and finds comfort in my words.

3) It is a way to tell a couple hundred people in one fell swoop about my most recent doctor's appointment, test result, etc, etc.

4) I hope that one day I can look back at this and laugh, and cry, and remember the lesson that God taught me.

and most importantly

5) Because sometimes God doesn't heal on earth, and I think some people need to hear that that's ok. When someone get's sick, people tell you they are praying for you, they continue praying for you, keep asking if you're better, and once you're better they move on. People with chronic illnesses don't necessarily get better on earth. But that doesn't mean that we aren't healed. My attitude is healed, I've been healed from certain episodes and symptoms, but it's never going away (most likely, Jesus is still in the business of miracles so it could happen but I'm not waiting around for it), and I know I will have ultimate healing one day in Heaven. And newsflash, no one goes to heaven with everything healed, everyone will have some kind of illness, scratch, emotional heartbreak, something or else they wouldn't be dead, and we are all terminal.

I think it's important to realize that it's ok if we aren't healed. I am still a whole person, I am still Megan. I have interests besides being sick.

This is why I write about my health, so that you can see that besides the fact that God hasn't "healed" me today, I'm still doing ok...I may have issues, but I'm still a person, just like you, and I'm trying to help you understand me :) 

Friday, May 24, 2013

It's a perfect day for a run...

As most of you know, I used to be a pretty intense runner, and track and field star. That is before I got colitis, celiac, fibromyalgia, endometriosis, PCOS, EDS hypermobility, and Dysautonomia that is. You may not know that part of the reason it took me so long to get diagnosed is because I was still intensely running (between 2 and 10 miles a day) and passing out daily because I didn't want to admit I couldn't run anymore and it confused my doctors.

You also probably don't know that every single morning the first thing I do before I move is look out the window and decide if it would be a good day for a run. I haven't been able to run, let alone walk around the block, since October 2012, yet I still do this EVERY SINGLE MORNING. Then every single morning, after I make my decision I quickly realize that it makes no difference if it's a good day for a run or not because I am so stiff I can't move, once I do move and stand up I black out from the blood pressure change,  the bottom of my feet burn and hurt so bad from the pressure of standing on them, I'm nauseous and dizzy, I get sweaty and clammy, and that's just my symptoms from walking to the bathroom. Then I quickly realize that even if it's a great day for a run, I ain't going on one anytime soon. And then I cry, every single morning.

See what people who don't have a chronic illness don't realize is that those of us with chronic illnesses have to grieve our past life every day. We aren't missing an arm or leg, we aren't dying anytime soon, we look normal to you, but we aren't normal. So when we wake up in the morning for a split second we (read I) think that there is nothing wrong with me, until I try to move. Then I have to go through the grieving process all over again.

Here is another thing you may not realize. Summer is really hard for those of us with chronic illnesses, especially those of us who are young with chronic illnesses. While you (regardless of age) are planning your vacation, cookouts, pool parties, etc. We are planning our out of town doctor's appointments, our weekly saline infusions, how to make as many trips in one because we can't be in the car for very long because of the heat (because we don't thermoregulate), and which rerun we are gonna watch today. We don't get to go to a lot of the fun stuff, and if we do get invited to something (because a lot of people simply stop inviting us) we often feel obligated to go and overdo it and are down for a week or more.

You don't realize how when you're judging us based on the things we do and then say that we don't feel good that we probably really haven't felt good at all the whole time, but we wanted to do something for an hour today because contrary to popular belief laying on the couch every day for the rest of your life isn't fun. It's really annoying. Sure, you would love to lay around for a couple of days since you "have to go to work every day" but I bet after 3 or 4 days you would go absolutely insane. That brings me to another point. I don't want to be on disability for the rest of my life, I will likely need to, but I don't want to. I am 27, I had a job I loved, of course I want to go to work every day and be normal and make more than 700 dollars a month...yeah that's what I live on...

You don't realize that we miss our old life so doing small things are huge for us. Being able to go get coffee with my dog every day is HUGE for me, it is my sanity, my independence. When I'm driving the  20 minutes (10 minutes each way) to the coffee shop I think about my old life. I think about my family in North Carolina, I think about my kids that I taught and played basketball with, I think about my track team that I coached, I think about all the jobs I had at various places, I think about autism camp, I think about camp, I think about music and all the places I played and all the instruments I played, I think about running, I think about track meets, I think about sitting on the beach, I think about hiking.

When I'm home laying in bed, I think about smaller things that I would kill to be able to do from my old life. I think about being able to stand up to wash the dishes in the sink, I think about being able to stand up to take a shower, I think about being able to do the laundry without pain and tachycardia, I think about shaving my legs, I think about being able to go grocery shopping, I think about being able to go in a mall to shop for things instead of having to do the majority of my shopping online, I think about being able to go to school and do homework without any physical or mental repercussions, I think about being able to remember that the garbage disposal is broken before I put food down it....again....and have to dig it out....again.

My point to this endless rambling of words is that being chronically ill sucks. People who aren't chronically ill seem to think we are living the life of king's over here and those of us that are chronically ill would do anything to be living your life, just for one day again. We are tired of grieving for our old life every single day. We are tired of putting on faces for the world, and when asked the question "How are you?" automatically answering "I'm fine" because no one wants the real answer. Most of us, when asked the question how do we feel compared to a typical (normal) person scale don't even know how to answer the question because we don't remember what normal feels like. That is besides the first 3 minutes of the day, when you open your eyes, look out the window, see the sun hitting the trees at just the perfect angle, you can almost feel the 65 degree sun on your face and you realize it's a perfect day for a run, until your feet hit the floor and you grieve your life again...until tomorrow...