Monday, April 6, 2015

Just like the good ol' days!

I survived my first full day back!
You have no idea how excited I am that this happened.
I totally thought I wasn't going to do as well as I did, but hey, sometimes you even surprise yourself.

Before I get into my story of the last week, you my dear readers get the benefit of a true first hand experience.

Now yes, all of my experiences are something that I have gone through...but they happened years ago and I'm relying on memories of hospital stays and medication troubles.

It's not really normal (since when have I ever been normal) for someone in their early 20s to have a hospital stay...or flare...or whatever you wanna call it...it just doesn't happen.

It happens when you're a kid...
Or when you're older...
Not when you're 23 and in the final stretch of your last semester of graduate school.

But it did to me.

I was due for a good flare.
The time was coming for me to get sick, not hospital sick, but to the point where my body would force me to remain in bed for a whole weekend or for a few days.

I had pushed myself to the limit for nearly 2 years, more so in this last year, but that's beside the point and I had yet to have a major flare.

It was time, I just had hoped that I could push it off for another few weeks that way I could get sick over summer break and not have to miss any school or stress over any assignments.

Well, you never really get what you want lol!

Let me say this once...
I haven't been this sick since High School.
Go back and read some of my first few posts and you'll understand what I mean by this.

Now it was a different kind of sick. In high school I had a rash, my blood was all crazy, and I couldn't move at all.

This time, I had a full body rash (yes it itched like crazy..still kinda does), my blood was all crazy, and I was in tremendous pain the first night.

So it was different, but my body was just as weak.

It all started with that dang cortisone shot in my knee that became superficially infected.
The 2 Rocephin shots plus 2 other antibiotics started my downfall.

I got a rash last thursday and I thought it was due to the stress from Comps, which if you knew how big of a deal comps is, then you wouldn't be surprised.

Well after comps I went home for what I thought was a normal weekend but nope...my body had other ideas.

Friday night, technically Saturday morning around 2am I couldn't sleep because I was in so much pain.
Like crying. Me. Real tears.

I'm also pretty sure I had a fever, but that part didn't come into play until the next night.
So Saturday I spent most of the day laying around my cousins birthday party holding the most precious little girl and just kind of being there because I didn't have the energy to do anything else.
It was Sunday when I woke up with a fever that didn't register on the thermometer and a fully body rash....like I was more red than white....that my mom decided we should take a trip to the ER.

4 nights, 5 days, countless amounts of blood draws, a ride in an ambulance because they transferred me to a different hospital (they didn't know what to do with me), and 6+ doctors later I'm finally released from the hospital with a vague idea of what put me in there to begin with.

I've never been normal....we all know that by now.

But here's the breakdown:
The 2 rocephin shots lowered my platelets to 44 (normal is 150-500). Low platlets mean bleeding to death, no immune system at all, and my personal favorite....no strength or energy.
One of the antibiotics caused the rash which is interesting because I had been on it before and I wasn't allergic but because my counts were so low...BOOM it happened.
My liver counts went up among other things...this part we are still unsure of. But I've just come to accept that this is going to be a normal thing from here on out and there's nothing anybody can really do to change that.
Oh and another thing that contributes to the exhaustion/no energy/no strength thing is that my heart was beating so fast, it was in workout mode for three days straight because of my high fever that we couldn't get down. So my heart was working out for me while my body couldn't. It was just thinking of me and how it knew I wanted to be in shape.....

So I've been on so many steroids that I'll be breaking out my big girl pants soon! Yay! Also, I'm currently off of pretty much all my meds except the steriods and I'm wearing long sleeves so I don't gross you regular people out with my bruises all over my arms (if you've seen them, you know they are nasty lol!)

I know that many of you have already been kept in the loop because of my family and friends.
Which, they are all so wonderful and I'm blessed to have them drive me around and make sure i'm ok. I couldn't be more thankful for that.

The hardest part about all of this and something that I think I've touched on before is that it's not the pain or the rash or the constant itching that gets to me. I'm used to all of that. That I can handle because I know how to handle it. There are pills for it, I know how to work my way around it...
It's the lack of energy. The lack of strength. The utter exhaustion from just doing one simple thing.

That's what gets me.

I don't like being weak.
I can guarantee you that if you ask anyone who has gone through this, they will have the exact same answer.

You can't take a magic pill and automatically have your strength back.

I was so tired that I didn't even want to watch TV. I didn't want to talk because I wanted to save my strength. I was a person who went 100 mph every single day to not being able to walk from the bedroom to the bathroom without having to stop because I got dizzy.

So yesterday when I went the full day without taking a nap, that was a success.
For the past week I had taken like 2 hour naps twice a day lol!
I NEVER take naps.

My body was just that exhausted and you know what...I HATE it.
To me, that's the worst feeling ever.
The feeling that you can't do things, not because you don't want to, but because you physically can't.
And this is different from being in pain. Being in pain gives you a reason to not do things, yes exhaustion is a reason... but weakness is not in my book.

But that was my reason this time. It's hard to accept that.
I was weak.
I still am weak.
But i'm getting stronger.
I don't have all the answers to why this happened, it just did.
My body forced me to slow down in a way that I literally had to stop everything I was doing in order to get better.

I don't like being weak, I hate the idea of it honestly. I respect and look up to people who go through this on a regular basis.

I'm just glad I made it through today with no naps, no passing out, and only a limited amount of Zombie Kara showed!

I guess sometimes your body forces you into things that you don't like so you can be more thankful for things that you do go through.

My body needed the rest.
I needed the reminder that in order to be strong, you must first know what it's like to be weak.



Side note:
Thank you for all the prayers, thoughts, questions, help, and just everything in general. Ya'll are awesome and continue to amaze me with all the support you give me and my family :)

Sunday, April 5, 2015

Top 10 List: Miscellaneous

10. Ten activities to get rid of anxiety

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This is a neat little list of things that you can do to practice lowering your anxiety. It goes back to some of the basic coping skills that you can use from yoga and exercise to positive affirmations.



9. 16 Gentle Exercises for People with Arthritis

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This can be used for any type of disability when done the right way. It doesn’t have to be just for arthritis. It’s a pretty cool list of low key, not hard on your joint exercises that I found could be useful for those wanting to become active or wanting to find a new way to cope and release stress.


8. Theory of Everything
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Based on the life of Stephen Hawking, this movie shows his struggles overcoming the obstacles that ALS placed on him. He beat the odds with the help of his friends and family and the fact that he never gave up.  Such an inspirational movie that features someone with a disability and shows how he was able to live with it. 


7. 30+ lessons life with Chronic Illness can teach you

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Written by a lady who has lived with a Chronic Illness for a very long time, this list includes first hand advice/opinions/thoughts on what it’s like to live with a disability. It’s always nice hearing what someone who actually deals with it on a daily basis has to say.  


6. Tips of Traveling with a Chronic Illness

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So you may be thinking why this is on a list for mental health and chronic illnesses. Well, it’s because this is information that we don’t normally think of. We tend to overlook the simple things in life, like packing or vacationing or even walking. So, why not put it on the list?!


5. Coping Skills Toolbox

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This is a pretty awesome thing to have handy! It’s simple and something that you can make all your own. It’s a toolbox for things you can pull out when you need it to calm you down and bring you back to your safe place. Check it out!


4. How Stress Affects the Body

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I have this on here because I feel like a lot of us really don’t fully understand the impact that stress has on our bodies. This breaks it down and explains what we all need to know.


      3. What you need to know
      
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      This is a basic definition list of some of the major autoimmune disorders. It’s helpful to have on hand, just like the last number about the effects of stress on the body. It’s just some resources to keep on file in case you find yourself wondering more about them.

1.      2.  Things you may not know about autoimmune disease

*****
I really like this page! It’s honest, it has facts, it’s written by someone who knows what it’s like to live with an autoimmune disease. Basically, it’s very relatable!


1.       1. Cake
      
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This is a movie about a lady experiencing chronic pain after a car accident. She then befriends the husband of a lady in her chronic pain group that committed suicide and together they work their way through the healing process. It’s a great combination of what it’s like to experience depression and chronic illness. It’s a wonderful film that I recommend seeing!