Monday, February 17, 2014

That's What You Think

Today I saw something that made me laugh.

P.S. If you are this person and you figure it out. I'm not laughing at you, I'm laughing with you, trust me.

Someone in a dysautonomia group said that she was going to start a chronic illness blog where she was going to bring awareness about her illness (fine, awesome), and she was going to share inspirational quotes (fine, awesome), and that she was going to do other bloggy things (fine, awesome) and that she was going to do this daily...this is where I start laughing hysterically.

People who start chronic illness awareness blogs get all excited when they start their blogs and they think oh, yeah, I'm gonna blog every day, and 33,000,000 people are gonna read my blog and I'm gonna be cool.

But the truth of chronic illness blogging is this. Blogging takes energy. And the people who write them are sick.

So this is how it goes. You write every day for the first couple of weeks because you're excited and you have purpose.

Then you get sick and have a flare.

Then you write here and there, every three to five days.

Then you write every 3 months. Because you can. Because it's your blog.

But then all your followers that you've built up go by the wayside for the occasional blog that you do get up every once in a while.

Then you decide that you need to get back into it because you really do like blogging so you even come up with a creative little thing called the Saturday Six Update so you know you'll update your blog on at least Saturday from now on. So maybe your readers will come back for that. Maybe.

But then you realize, oh wait, chronic illness means it can happen any day....even that Saturday Six Update...sometimes that doesn't happen either...and you can't do it on Sunday, or Monday, so you just wait til next Saturday to blog. So then it's 2 weeks again...or three if you forget on the second week and still don't get the Saturday Six Update done...

And sometimes you've got all these really good blog ideas rolling around in your head, but you're just too dang tired to get them out onto the interwebs....because blogging takes energy. dangit.

So this is why, today, when I saw yet another person with a chronic illness swear up and down that they were going to blog every day....I started laughing hysterically.

Because if you're blogging're probably not sick enough to have a chronic illness blog. Just sayin'. At least you won't be blogging every day for long. It'll catch up to ya, trust me!

Friday, February 14, 2014

Truly Living with Chronic Illness

I've been wanting to write this blog for a while. But it's hard to write a blog like this when you're really trying to write to yourself and you truly don't believe what you're about to write just quite yet. When you don't think the words of wisdom you are about to impart are true because it's hard to understand. 

But I'm here to tell you, whether I believe it or not. It is possible to truly live with chronic illness. We can all have dreams and want to do things. We can all have hobbies and passions. We can all be someone in this world. We can all do something to change the world. No matter how disabled or ill we are. There is still something we can do. You have to be positive and think about the things you can do and not focus on the things you can't do. Focus on the positive aspects of your illness not the negative aspects of your illness. 

So many of us with chronic illnesses think that because life has changed that it's over. But it's not. Maybe it's just beginning? I for one don't know anybody that has the perfect life. No one that doesn't have a single obstacle in front of them. Something to grow them and make them a better person, someone who they never knew they could be. Maybe your chronic illness can change your life for the good, in some ways, obviously not all the ways, because let's face it...chronic illness sucks. 

We want to have our old normal lives back, be able to do normal things. Heck we want to be able to go to the grocery store without symptoms. We want to work, we want to be able to go to parties. We want to have nice things and not spend all our money on medical supplies. I really like this quote that summarizes how we feel a lot of the time because everyone is broken and we all want nice things. 
“It’s okay to want things other people have; it is quite natural and we should want good things for ourselves. But we should not fool ourselves into thinking that other people have picture-perfect lives. Everyone struggles, everyone hurts, and everyone is enduring something that they probably won’t tell you about. Whatever picture people paint their life as, rest assured that any one life in all its parts is beautiful and dark, hopeful and weary, a blessing and an everyday battle. Focus on the good parts of your life and be grateful. Don’t compare yourself to anyone and while we’re at it, let’s be a little kinder to each other along the way.” - Kovie Biakolo
While we are busy realizing that everyone is fighting a battle everyday, everyone has hurts, habits, and hangups. While we are trying to be kinder to each other we need to try to find some hopes and dreams. It may be a little harder to do something that we are passionate about. It may seem ludicrous. But we have to have identity. We have to be independent. We have to have something in our lives where we do not rely on the help of someone else. Something that we rock at.
“Chronic illness can rob you of your hopes and dreams – if you let it. Sometimes we need to focus on the small ways we can reclaim our identity or independence. Sometimes we need to look past our disability to see the person who we really are inside, not just who we are physically. We deserve to reach for the stars, even if our bodies want to keep us firmly planted on the ground.” - Unknown
 For me, I have this blog to focus on. My small business of making satchels and totes for people. And dietetics school because I'm determined that no matter how hard and crazy it gets I will be a kick butt dietitian one day. I will succeed. Even if I only volunteer with my degree. Somehow I will succeed. I stay as independent as possible in my care too. I strive to have hopes and dreams with chronic illness, no matter how bleak the winter gets and brings me down. No matter how many new symptoms emerge and try to keep me in bed 24/7. I will achieve. No matter how long it takes me. Or no matter how different a way I do it in. This is how I know that I'm truly living with chronic illness. Because I have passion. And I have things that I want to achieve no matter how bad the days get. 

Saturday, February 8, 2014

Saturday Six Update

1. Medical Stuff

  • Just had a saline infusion this week, but it was a very dramatic one thanks to my port.
2. I got my car fixed again this week. This time the drive belt needed replaced. I got that done on Monday, now my car should be all as good as new.

3. I had to cancel my massage and chiropractic adjustment this week due to snow. We got about 8 inches of snow. Again. I am so over the snow. It can be spring, summer, or autumn now. I don't care which.

4. All of my meds got switched to liquid to go through my feeding tube finally. This is extremely exciting because it saves me oh so much time and energy. And time. And energy.

5. One of my professors decided to wait until less than 2 weeks before a HUGE assignment was due to give us specifics about said assignment (as in specifics still aren't posted but my BFF finally got her to say them out loud to her and she reported them to me and they are supposed to be posted by the end of the weekend and it's due the 21st.). Well, I'm supposed to make a presentation that is 20 minutes long that is like I'm presenting at a professional conference so it has to be scientific and professional. This would have been nice to know the first 5 weeks I've been asking for information. Especially since I didn't have a laptop because my hard drive crashed until my mom felt bad for all the crying and bought me the one I'm blogging on right now. It's just a little notebook, but it gets the job done. And I like it. :)

6. My port is infected. That is the drama from my infusion on Thursday. It's really annoying and red and painful and swollen. I'm on an antibiotic. I hope that it kicks it because I really want to keep my port. That's also why this blog is short and too the point because I don't feel well. 

Have a good week everybody!