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 time...one 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.

http://mentalhealthdaily.com/2014/06/10/prednisone-withdrawal-symptoms-how-long-do-they-last/

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.



Really.

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:
https://rheumatoidarthritis.net/living/just-head-impact-ra-mental-functioning/ 

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!

https://youtu.be/-qkf0fLU2Ao


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! :)

Spreading the word

I did something I've never done before.
I went into a sorority house.

No, I didn't rush lol! I'm a bit too old for that, but I did get the chance to teach them something.

Let me rewind a bit, over the summer at the conference there were these girls there helping out with the kid sessions. They would play with the younger ones and entertain them while their parents attended the adult sessions. They also handed out Pandas, the stuffed kind lol! I wanted a Panda, but I was not allowed one. They were for the children.

So I then made it my mission to get a Panda!
No! Not really! But I did want to know who these girls were.
We found out that they were from the UCF Alpha Omicron Pi chapter and that the Arthritis Foundation was the foundation they raised money for. Also, pandas were their animal lol!

I was shocked! I had no idea that greek life would think about my foundation, let alone want to help it.

I then took it upon myself to reach out to the chapter here in Tallahassee. I really wanted that panda.
I was able to get in contact with their philanthropy chair and found out they had an annual bowling, which is now a softball event and they were interested in me coming out to speak to them!

I was amazed! Me, going into a huge sorority house to tell them about me, my involvement, and how they can raise awareness. Oh my gosh.

So I put that in the back of my mind until the week before it was time for me to speak.
I talked to my brother and my friends who had been involved in greek life so they could prepare me.
But nothing that they said actually prepared me for the experience I had.

I arrive at their house and kind of stood outside awkwardly until my contact let me in. The house was beautiful and the girls were very nice.
But I was scared to death.
I didn't know what to expect
Everything I had planned in my mind to say just went out the window.
All I knew was that I just wanted a panda.

There were so many girls.
Every where I turned they were watching me.
I felt like a really awkward fish out of water.
They made me feel welcome by all clapping for me and saying hello!
I really wanted to wave, like a princess as I was walking down the aisle towards the front of the room, but then I thought that would make me look even more awkward than I already looked lol!



So then I thought, ohhh I can runway walk down to the front like Taylor, Demi, and Beyonce!




But it turned out more like this...


So after I made my entrance, I turned around to face everyone and began to speak.

I've lectured before, I've been in front of crowds before, but I've never talked to over 150 girls at one time.

I told them about promoting their arthritis events through social media using hastags related to the foundation, I told them about the cost of meds, threw in some stories, and even gave them a 10 second medical lesson on what JRA really is.

I think it went well, well I hope it did lol! I made them laugh a few times and I feel like I got my point across...even though I totally forgot everything I wanted to say. But some even asked questions! Hopefully I made their chapter night a little more interesting...or less boring....I'll take either!

I'm telling you about my latest adventure in hopes that you'll see if I can go 150 miles outside of my comfort zone to do something that I really care about, you can do the same. I never in a million years thought I would do something like that. But I did! And I did it because I want to spread the word to others and let these girls know that what they are doing is making a difference.

So I challenge you to go out of your comfort zone for something that means the world to you.
Who knows, it may change the way you see things, for the better!

One sentence

Over the summer at the Arthritis conference I sat through an advocacy session. In that session they told us about ways in which we can bring attention to arthritis by using social media in order to get our state politician's attention.

They told us that we could only have one sentence.
140 characters.

Why 140 characters you ask?
Well, because twitter and other social media sites only allow 140 characters and when you're chasing down the politicians, you have to have a hook in order to get them.

A one sentence hook.

In my field we are supposed to practice our elevator speeches for conferences. For that, we at least get one minute.

You know how many words I can say in one minute?
Way more than 140 characters.

So you see my dilemma when thinking about my one sentence.

I have so much to say about my arthritis. I have a story that is worth more than one sentence.
Heck! I have a blog dedicated to it!

How can I put all of that, all of my pain, my experiences, my life....into one sentence.

It deserves more than that.

And I see their point. I know that once you hook the reader, then you can dive straight into the abyss. But how do you put everything into 140 characters?
It seems so insignificant to me.
I'm not insignificant.
My story isn't insignificant, at least to me.

One girl said that her one sentence was "I take over 22 pills a day just to be able to move"
One boy said "I pay over 1200 dollars a month for one shot and that's not the amount insurance covers"

Think about how insanely courageous their stories are just from those 140 characters.

So I started thinking about what my one sentence could be.

"The kids I've worked with at camps have experienced more pain in their 8 years than you will experience in your entire lifetime"

"I wake up not knowing if i'm going to be able to walk on a day to day basis, how do you spend your mornings?"

"I'm allergic to nearly every single biologic out there on the market that is used to treat my disease"

"I know that I need a great job with insurance benefits because insurance companies won't take me alone due to my pre-existing condition"

"I chose to go into a career that will help those like me due to the limited resources provided for those who have disabilities"

It's a work in progress, really. It's not something I'm good at, but if advocating like this for arthritis will bring attention, funding, and awareness to it....then I'm going to try my hardest.

Everyone lives with the idea of leaving something behind. Leaving a mark on this world in one way or another. What's your hook?

I challenge you to think of 140 characters that will bring awareness to something, anything of your choosing.

So what's your one sentence?

Just make it a good one.

The many choices of a twentysomething with Arthritis

I went to the doctor today.
Yes I go to the doctor all the time so it's not that interesting, I know.
However, I went because my lovely red mustache is back and I'm tired of not being able to fix it.

Which I should be used to not being able to fix my health at this point in my life, but you know, whatever.

So he, like all the other dermatologists that I've seen, told me that it was something I was allergic too (great!) that is constantly suppressed by the prednisone that I take and whenever I lower that, my rash comes back.

He said that until we find what I'm allergic too (been there, have yet to find it) the rash won't go away.

Now in my mind, the simple fix is to up my steroids like I normally do and BOOM! Problem solved.

But he, along with my new rheumy, want me off of this drug because of the many many harmful things it does to the body and blah blah blah....I've been on it 8+ years now, I've heard this speech before.

But it fixes things! It makes my life easier and it makes me feel so good!

And if you said I sound like an addict, you would be correct!

So I'm now at a crossroads.

My choices are:

Do I detox from the prednisone and have the red mustache until we can figure out what I'm allergic to (which there is no guarantee we will ever find out), while being in pain. The benefits from this are that the nasty side effects from the steroids won't be as bad, my organs won't shutdown, and I'll be alive and overall in a healthier state.

 or

Stay on the steroids because it's the easy fix, I will live a somewhat pain free life where I don't have a mustache and it'll slowly kill my insides while adding 10 extra pounds but I'll be able to do the things I want to do while delaying my bones from deforming.


What do you do?

Do you take the horrible medication now because it allows you to live and look the way you want...
or
do you stop the medication in hopes of prolonging your life and allowing your body to not kill itself sooner than it will.

What happened to the simple decisions of a twentysomething...you know the ones where you decide what to wear, what guy to date, what movie to see, what job you want.

Not the ones of...
What medication will not break me out into hives and shut down my immune system?
What food and beauty product do I need to avoid in hopes of not having a red rash?
At what point in my life will I not be able to use my hands anymore?
What job do I need to get in order to get the best insurance?
When will I find a guy who won't be terrified of my disease?
How much stress is too much stress before a flareup comes?
I wonder what joint won't work today?
I wonder if I can get away with wearing sweatpants to school? (the answer is always no)
Is 8:00 too early to be in bed?

And many more!

I've never regretted the fact that I had arthritis. I mean, I never had a say in the matter to begin with and there are worse things I could have. But I wouldn't be normal if I didn't question it or get angry at it from time to time.

People say to me all the time, "I hope you feel better soon", "I hope you get better", "I wish I could take the pain away", and "I don't know how you do it".

I don't mind them saying that at all. It's nice of them to do that!

But the reality of it is:
Sure, I'll have my feel good days, but I'm not going to be getting better.
I've been seeing my future a lot lately in people around me who have RA and with the looks and talks the doctors give me.
I can only hope that better biologics come out that can slow the progression of the RA. I can only hope that my fingers and wrists and knees won't swell and will stay at the level of mobility that they are at.

It's funny, my new rheumy was checking my wrists and she slipped out with, "Oh, that's as far as they go" and then decided to order an x-ray lol! I just laughed, because that's all you can do.

How do I do it?
I just do.
I don't have another option.

My options are above.
Do I stop taking the steroids that are the worst possible thing for me in order to save everything else?
I know people who have RA that aren't on them and they can function, so why can't I?

Or do I stay on them and potentially deal with the side effects...but I'll be in less pain?

Let me remind you of my addiction post that was enforced by the doctor today who told me "getting off prednisone is like trying to detox from crack-cocaine".

I don't want to make these decisions.
I just want to color in my Harry Potter Adult coloring book and watch movies.

Which I'm laughing right now because I can really only color half a page before my hands stop working lol! Guys it really is funny!

You've gotta laugh through it all because if you don't have a sense of humor (even a dark and twisty one like me) then the struggle to get by is real.

And trust me, you don't want to the struggle to be real lol!

I hope that throughout my many posts you're able to see what it's like inside the mind of a person living with a chronic illness. If you have any questions or topics that I can write about, maybe you're interested in how I deal with a specific situation or how I think about a certain topic...please let me know! I'm here to ramble and let you in. Thank you for all the love and support and allowing this blog to reach many people.

I hope you have a Merry Christmas!

Finally found the one...for now.

If you've been keeping up with my posts (which I know have been slacking lately to do school) then you know that I've gone through more doctors than Hogwarts has gone through defense against the dark arts teachers.

However, I think I've finally found the one.

I met her last Wednesday and guys, when you know, you know.

It's really hard to meet a new doctor. And I've talked about this before, but it's not hard to deal with...it's just hard to have to explain yourself again to a new person.

Especially when that person is the one who has all the power and controls whether or not you'll get your medication or not.

This new doctor was wonderful. She really made me feel like I was the expert and that she was here to help me in this process. Which is what doctors should do!

I didn't even have to give her my speech about how I was the one that will play doctor from time to time.

It really helped that she was able to joke back with me about my arthritis.
Now don't get me wrong, we had our serious moments.

For example, she was the first doctor in a while who got me to take a flu shot.
Now, realize that in order for a relationship to work...there has to be give and take.
She gave me the option of taking one or else and I took it!

But really lol! Some battles are not worth fighting.

I wanted to gain her respect and by doing something like that, I feel that I'm being a good patient.

Which I warned her that I myself am a good patient, but my arthritis is not.

Side note: Every time I've gotten the flu shot, I've gotten the flu. Which she says was a coincidence, buuttttt no. So we made a deal that If I was to actually get the flu this time, she would allow me to tell her "I told you so". Which I loved!

I even mentioned to her that I had a blog and how I helped out at Kid's arthritis camp and you know what?? She was interested in both. She immediately thought of someone who could benefit from talking to me.

How great is that?

The sad thing is, I'm constantly wondering how long this is going to last. Will insurance change and I'll have to switch? Will she get tired of the way the hospital treats her and leave for private practice (This happens a lot)? Will something bad happen and I won't be able to see her anymore?

All of these thoughts run through my head. It's like having an awesome first date and then you wait for the guy to mess up. Like you know they have flaws so you begin to search for them.

It's always too good to be true, right?
So how does one fix those problems?

Is there a way to advocate for specialists to be treated the right way?
Is there a way for me to tell the insurance company I'm going to see who I want to see?
The second one is probably true, but I'll have to pay an extreme amount for that to happen and well, I'm not married to a rich celebrity, so that won't happen.

But seriously, when you have a chronic illness and you finally find someone who clicks with you, you're going to do whatever you can to keep that working relationship afloat.

And if you have a chronic illness and don't see someone who works great with you, I suggest you go find one. Your illness isn't going to get any better if you don't make the initiative to help solve the problem.

Maybe like Hogwarts, you've gotta go through some dementors, some crazy adventures, and one big war with insurance before you finally find something that works for you.

But once that's over, you'll be in a better place....with meds that actually work and a doctor that does everything she can to help you.

Keep your fingers crossed that this one works out!

Stress, Surprises, and Spoons

I'm going to do something different in this post. I know I haven't written in a while and that's just because my schedule hasn't made it to where I can take a break and actually write down my thoughts. I was also debating whether or not to share this post with the world. Well, I made the somewhat hesitant decision to do so. But I'm doing it because I want to show you just how amazing you are.

Nobody knew I wrote this post. I wrote it about 2ish weeks ago when I was hurting and had a horrible day. I wanted to give you an personal, inside look at what it's like to struggle with pain, thoughts that come with it, and stress. It was one of those "I'm going to type out my feelings just as they are" type of things.

So enjoy! lol!

_______________________________________________


Lately I've been thinking a lot about my life and if I'm going in the right direction.

School is stressful, man.

And for the past few weeks I've been fighting to stay functional.
The stress takes a toll on your body and when you have a chronic illness that can be the one thing that makes or breaks you.

Can you handle the stress?

These days, I don't know.

At what point do you let the stress and pain take over?
At what point do you beg for mercy because you can't handle another day and all you need is just a breather?

I like to think it wouldn't be this bad if I was back on my steroids, but those cause problems too.
I've been on them over 7 years and finally I'm off of them.
That is a miracle in itself!
I've never really been able to get off of them, but I'm going on a month and 12 days of being free of them.

But those help.

So what's the lesser of 2 evils?

Oh and the cherry on top is that I'm out a rheumatologist until November.

The good times just keep on rolling in!

But these things are just obstacles, right?
They aren't signs that I should give up, throw in the towel, and walk away?
They aren't voices in my head saying that I can't do this.
They aren't taunting me, saying that I'm too weak to make it to the end.
Saying that the odds of a person with a chronic illness making it to her doctoral graduation are slim to none.
I mean the research favors that very notion.

All of that isn't true, is it?

Am I wasting my time and energy on something that is killing me?
Is the end result worth what I'm putting my body through?

Or is the exhaustion, pain, and frustration just getting to me?

Shake it off, right?
I won't quit.
I will push forward.

I mean, Lauren Holiday had open heart surgery as a kid and now she's about to retire from an amazing soccer career. She's on the US women's national team, you know, the ones that just won the world cup.
I recently talked to a wonderful lady who just did an Ironman and she has RA. An Ironman! I can barely walk a few miles!
I know another one who just graduated with her Ph.D from NYU and she works for the arthritis foundation helping kids just like us.

It's not impossible.
It can be done.

I wrote this out because I thought it would make me feel better. And I was right....it did, for that day.
I also wrote this out so you could see the struggles that we are faced with. I know I talked a few weeks ago about the places are minds will wander when we are in pain. Well, these are some of those thoughts. We start to second guess ourselves. We slowly start to lose faith in our abilities. We start to realize that life might be easier if we just let those feelings take over.

But then what would that make us? To me, that would make me a quitter. That would make me regret something that I had the power to control. I always remind ya'll that I don't have all the answers. But I do know that I want to beat the odds.

_______________________________________________


After I wrote this post I went to class, came home, and checked my mail.
In the mailbox was my first spoon.

I was so confused! lol! Why did I have a spoon in the mail!
Then over the course of the next few weeks I got more and more spoons.
I can't begin to tell you all how much that meant to me.
Other than my blog, I'm not one who likes to dwell on the fact that I go through these things.
I don't like talking about the struggles and I don't really like others to know about them.
This blog has given me the opportunity to share those parts of me in hopes that I can reach out to others.
I don't do this for pity. I don't do this for sympathy.
I do this because others who are going through the same things need to know they aren't weird, or crazy, or alone.

So thank you all for reminding me that I'm not alone.
Thank you for giving me the spoons I need to survive each stressful, crazy, and insane day I have.
Thank you for continuing to read my rambling thoughts and supporting me in all that I say and do.


And if you ever come over, I now have enough spoons for all of you :)

I've got no spoons left

If you haven't heard of the spoon theory, I highly suggest you click on the link below and check it out.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

It's pretty awesome!

I will go ahead and give you the cliff notes version for the sake of this post though! lol!

Basically, a girl with a chronic illness was trying to explain to her friend that she just couldn't hangout because she didn't have any energy. The only thing she had in front of her was spoons, so she used them! She told her friend that she only gets 12 spoons and she took 12 spoons as well. The spoons represent the amount of energy used up doing an activity. She then goes on and talks about her day and subtracts the spoons as she goes along. She was doing her best to show her friend that they can't do the same activities and still feel the same way.
By the end of  explaining her day, her friend only had 1 spoon left and she still had to eat and shower. She was asked, "what are you going to do? You can make dinner, but you lose your spoon. Or you can eat leftovers and use little energy that way you can shower. It's a decision that you have to make". Her friend asked for more spoons, but was told that she wasn't allowed to get any more. Once you use your spoons, you have to rest in order to get some back. By the end of the example, her friend finally understood that when you have a chronic illness, you can't do everything.

I LOVE this example and I really want you to go read the link because I missed a lot of stuff that you should hear!

This is a topic that I struggle with all the time because I want to do everything and hangout with everyone.

I feel like I let people down if I don't say yes to them.

It's something I've got to start working on because school drains me enough, I have to be smarter about using my spoons.

But then I start to think about the expectations placed upon me by my professors and school. I have to be the best, give the best, and do the best I can.



It's like this, except if I use all of my spoons on those things I can barely function.


So which area of my life do take spoons from to use them for school? Or my friend? Or my family?
Or do I continue to run on negative spoons all day everyday.

Ugh. The struggles of having a chronic illness.

If you figure it out, let me know.

Until then, i'll be using a spoon...or two...to write 3 papers this weekend.