Wednesday, February 17, 2016

Liar Liar Pants on Fire

So I've finally made it to the pain phase in this withdrawal. My sugar is only spiking once a day and my rashes come and go. This is the part I know how to handle. This is the part that I can handle.

I think.

Normally, when my pain gets bad I'll just up my prednisone, take a muscle relaxer, or when I was younger I would get put in the hosptial.

But that was then...and...this is the first time that I'm actually having to deal with the pain without any help.

Yes, I could easily take my prednisone again, but I don't think I could take it and go through all of this again. Meaning that if I ever go back on it, I'm not coming off.

I could take a muscle relaxer except I don't have any and won't see the doctor until spring break.

And we all know that if I was to go to the hospital they would just shake their heads at me because honestly there's nothing that they can do to help and they are going to think I'm an addict wanting pills.

That's the thing I hospitals these days just think everyone wants meds. Ahh, I digress. That post is for another time.

So I'm having to deal with my pain...alone.

Needless to say I've cried and broken down more in the last few weeks than I have in the last year.

I swear if it wasn't for the stress of school and having to function like a normal person each day, it would be fine.

But it's not.
And because of that, I have to lie.

Now if you read my blog and see me most of the time, then it's not super hard to see through the act I put up. And if you know me well enough, it's easy to call me out.

But! If you don't know, and most of you I've been able to fool, now's your chance to find out.

It's funny because just the other day I had a classmate walk up to me and ask if I was ok because she could tell...but nobody else who had talked to me that day could. They were like, "I didn't know you didn't feel well" and I'm like, "that's totally ok, I was hiding it".

I don't like to go broadcasting that I feel like the tin man who got hit by a truck. I don't want others to feel bad for me, that's not my goal here. I want to be able to do what I need to do and it's just easier if I fake it till I make it lol!

Because of that, I lie. All the time.

Yeah, I'm doing fine!
Of course I'm ok!
No, I'm just tired.

And on and on and on.

It's what we do. We pretend everything is ok because for me:
1. I don't like the attention
2. I want to think that if I say I'm ok, I will be ok
and 3. I don't want others to think that If I'm sick, I won't be able to keep up with my responsibilities

So for me, it comes down to pushing through the pain and the not feeling great in order to show others that I'm capable of being normal.

Which everyone, including me, knows I'm not.

But I'm going to lie to you anyway.

In all reality, we all do it.

You do it when someone asks you how you are.
You respond with, "I'm good, and you?"
Because you know that if you say you aren't ok, then you have to explain yourself and it could get awkward and you don't know if the other person truly cares or if they are just asking because it's polite.

I also feel like if I truthfully answer the question it might make the other person feel weird. I don't know, it's just a thought in my head. Like ok, now I have to explain that I'm really ok with not feeling great because I'm totally used to it, which then makes me feel like they feel weird because I just blew through half my life story and they get confused and then it just becomes one big hot mess.

It's just easier for me to say that I'm ok.

Which lately I've been saying, "I'm here!" which is my way of saying I made it out of bed and got dressed today which means that's a W in my book.

If I had a tell, that would be it.

I said that to my professor the other day (the one who called me out for swaying in my seat) and she kind of scrunched her face and cocked her head in an I'm sorry way, then asked, "how long will you be feeling this way". Then I had to go into more details of how I wasn't sure, but I was really ok, and no I'm not suicidal, and yes I have help if I can't get dressed, and it was just one big mess.

So now I know that even though professors can tell that I don't feel well, to just lie to them anyway about it lol!

The funniest thing about this is....
I suck at lying.
I cannot keep a straight face to save my life.
When I was little or with my friends, they all knew when I wasn't telling the truth.
So I never lied because I knew I couldn't get away with it.  

This is a little different.
Or maybe, everyone already knows and they don't want me to know that they know....

Or not. Who knows.

But because I lie all the time about how I'm really feeling, I figured I would let you in on some secrets.

These couldn't be more spot on.

My favorites are: 3,6-10, 15, 22, and 25.

And remember that everything I'm saying here is how I feel and my opinions. While we might feel the same most of the time, not everyone truly thinks or feels the way I do about this disease.

In all seriousness, if you really do have a question or want to know something about the way I'm feeling, I'll do my best (pinky promise) to tell you the truth lol! ;)

But really, isn't that what this blog is for? Me unleashing all (almost) of my thoughts and feelings and opinions out into the world...well the internet world lol!

Tuesday, February 9, 2016

One more day

One more day.
If I can just make it one more day then I know I've got what it takes.
One more day and then I can crawl into my bed and just forget my problems.
One more day.
Come on body, push yourself, one more more day.

I've mentioned on here before if I get really emotionally drained or stressed I'll normally just remind myself what day it is.

Today is Tuesday.

Lately, my mantra has been one more day.

I think as counselors in this field, we take for granted the things we are taught.
I took a substance abuse class in my masters and I TA'd it last semester.

Everything I learned and then taught in that class didn't really mean anything to me at the time.
I wasn't interested in that population and I knew I was too naive to work in that setting.
"Oh you say you haven't had a drink in 3 weeks, that's amazing!! Congrats!!"
I'll literally believe anything they tell me!

But learning about your clients experiencing something and thinking you know what it's like and experiencing it yourself are two completely different things.

That's why I want to work with people with disabilities.
I can truly empathize with them.

So up until the last 2.5 weeks, I thought I understood what it was like to withdraw from a drug.

Now I constantly joke about how I'm addicted to my medication. My body cannot function without it.
That statement has never been more true.

Let me tell you about the last 2.5 weeks and you'll see why. You're also about to see a different Kara than the Kara you know. I was torn on whether or not to write about it all, but after the week I've had, I want to spread the word.

It's all about awareness, right?

I stopped taking my prednisone on the 20th of January. For those of you who don't know what this drug is, it's the miracle steroid. It can make you feel like a million bucks or it can make you feel like a bloated whale. It does both, but it helps you move so you endure it. I've been on this evil little pill for nearly 9 years. I've never been off of it for more than a week, that I can recall. I've also been on insane amounts of it before too. So when you think, "Oh, one little pill? That's nothing." No. I've been on IV bags of this.

It was time I get off of it for many reasons. My doctors wanted me off, my momma wanted me off, and I need to get allergy tested (this med suppresses my immune system and it suppresses things I could potentially be allergic too).

The first 3 or 4 days were easy. I wasn't wanting to eat everything in sight, I was a little achy but nothing I couldn't handle, and it was nice taking one less pill a day.

It wasn't until the end of the first week that I started experiencing the withdrawal symptoms.

Now let me pause here and just throw in that I didn't fully know what was happening to me until I started researching it. I found this article and sent it to my mom. She had also found similar results, which made me feel a bit relieved.

So this article mentions Body aches, depression, dizziness, fatigue, HPA changes, mood swings, joint pain, and a skin rash. All of which I have now experienced. And all of which can last up to a few months. Yay.

Now back to the story!
So I had started getting extremely dizzy and my brain was getting fuzzy. This worried me. I never really get dizzy and I've never experienced the brain fog that comes with Arthritis. So I called my mom and that's when she sent me more information and I was able to find the article above. It took me two more days before I called the doctor. The real game changer came when my professor called me out on it by asking if I was ok because my eyes were unfocused and I didn't seem like myself. That's when I knew that if others were noticing, I needed to do something about it.

Called the doctors, got tons of labs drawn, 2 EKG's, and then I waited. During this time I was (and still am) checking my sugar. If you read on the list (I only listed the ones I was experiencing) low blood sugar is listed. This is because the steroid pretty much takes over your glucose and when you get off, you're body doesn't know how to produce it anymore. Same thing with the HPA changes.

Well as it turns out, my blood sugar wasn't dropping. It was spiking into the 150s and 160s and then dropping to the 80s within an hour and a half. That, in my opinion, is what was causing the dizziness.

BUT! None of my doctors really believed me. Or if they did, they didn't say so and acted like this was completely normal and nothing was wrong with me. My labs came back fine, for the most part, and they just told me to continue monitoring things.


So at this point we are half way through week 2 and the mood swings and depression hit.
I'm aggravated that my labs are showing what I'm feeling, I'm ticked off that the doctors aren't validating my feelings, and I'm livid that these are the symptoms I'm having.
Give me pain! I can handle that!
Give me a rash! Lord knows I've been there!
Give me something to make them notice that I'm not okay.
I was feeling like I was losing my mind, my temper, and my patience all in one.
I wanted to bite people's heads off for no reason. Every little thing annoyed me and I didn't know why. I didn't have a legit reason to get mad or upset or cry, but I did.
I think I cried probably 3 days in a row and I rarely cry.
I just wanted proof and I didn't get it.
I've never felt that low and that mad before. It was totally out of my control. I would go from being normal and feeling like "I've got this" to absolutely screaming at myself because maybe it was all in my head. It was a rough 3 days.

Then mom tagged me in this article on facebook and I felt a little less crazy: 

Other people felt this way too. They knew exactly what I was going through with the doctors, hating that they couldn't do anything to fix it, and just wanting answers. Having a scientific explanation helped me. Knowing that there was a reason and that I wasn't just losing it pushed me to not give in and take a prednisone pill.

Because it is that easy. I have them in my bathroom right now. I bet you 100 dollars that I could take one of those and in 3 days be back to the old Kara. I told my doctor this too. It's that simple.

But I didn't lose my self-control. Still got that!

After the emotional rollercoaster that was a few days ago, the dizziness has decreased to once or twice a day and I'm no longer feeling as mad or depressed as I was. The mood swings have nearly gone so the emotional aspects have subsided for now lol! Fingers crossed. But it seems as one symptom goes away, another pops up. So currently my rashes are back (totally jinxed myself with that one) and the amount of pain I'm in is increasing.

But in the grand scheme of things, those I can handle. Those I got.

It's the "trying to control all of your emotions when you just want to explode for no reason" and the feeling of passing out that I have trouble with.

I was talking to my friend the other day and explaining that I was crying for no reason and that I didn't like that. She laughed and said, "Kara, you always have a reason to cry".  I think that helped.

Just like in counseling, sometimes all we need is validation for our feelings. Our doctors seem to forget that. If they can't visually see the numbers change or see the affects on your body (by golly they can now because of my rash!) then it's not happening to them. Or maybe it is, they just don't have answers for it.

That's something that we need to change. That's why I write on this blog. It's all about awareness.

One more day.
One more day and maybe this will pass.
One more day and maybe research will be done in order to find answers.
One more day knowing you aren't alone in this fight.

Totally didn't mean for this to happen, but this was stuck in my mind after writing this lol! And now I'm totally cracking up so i'm just going to leave this here!

If you don't feel motivated after watching this, then I just can't help you anymore lol!

But really, thank you for reading and sharing this blog. If it wasn't for others who have arthritis and reading their posts, then this week would have been even more difficult to get through. I only hope that others will feel the same! :)