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.

Controlling the uncontrollable

I survived the first week of my doctoral program!
Yay me!
It wasn't without a few hiccups though.
2 to be exact and both of which I had no control over.
The first one I won't explain because it's not as funny as the second one.
So today was my last day of classes for the week and the worst thing happens!

It's a foundations class, so my professor was discussing professional things like when we attend conferences we are supposed to act this way and do that and blah blah blah.
Well one of the activities was to shake everyone's hand in the classroom.
There were 25 of us in there.
Anyone who knows me, knows that I don't like to be touched.
I don't like hugs. I don't like you in my bubble. And I sure as heck don't want to shake 25 different hands that have been who knows where.
I'm not OCD...I don't meet the criteria, I promise.

Anyway, she makes her way to each of our desks and gives us a "practice" round so she can tell us how bad we are.
She gets to my desk and I stand up.
She sticks out her hand and I look up at her and just decide to go for a fist bump instead.
Now, this professor had me in the spring, so she knows me.
She shakes her head, laughs, and makes me do it.
She then turns to the class and says that it's time to shake everyone's hand.
I lose it.
After shaking 2 people's hands...I'm now shaking myself.
By the time I get to number 4, everyone else is done!
So now she looks at me, asks what number I'm on, and then tells the class that I have to at least get to 10 so they need to come help me.
I'm still shaking (both of my hands were trembling like crazy) and now it's getting harder to breathe.
I make it to 6 and now everyone is in a circle around me.
Yeah, let's form a circle around the girl who is nearly having a panic attack and let's watch her fail at doing a simple task.
Finally, I make it to 10 people and she let's us go wash our hands.
I was traumatized by that point and the rest of the class time was spent calming myself down.

I'm telling you this story because it's something that I had no control over and I failed miserably at keeping it together.

If you haven't guess by now, I'm a control freak.
I don't try and hide that at all.
I like planning, cleaning, making lists, and making sure things are in order.
Everything in my apartment has a place and once I'm done with it, it goes back where it belongs.
I have a weekly to do list.
Things get crossed off and then I start over.
It's just a part of me that I accepted a long time ago.

My grandmother called me mother hen when I was in 3rd grade because I used to boss my brother around and make sure he had everything done.

It was at this moment that I embraced my destiny to be someone who loves order.

I think I'm this way because I don't have control over any aspect of my health therefore I try and make up for it in other areas of my life.

So how do we control something that we have no control over?

This came up at the conference a few times.

We don't have the slightest bit of control over when we are going to flare, how our medicines work, or if we are even going to be able to walk in the next few years...or even the next day.

For me, it's one of the hardest things to think of.

If I can't control what's going on inside my own body, how am I supposed to control anything else that happens in my life?

It makes me feel like a failure at times.

As a counselor, we do our best to help our clients gain back that control. We help them find coping mechanisms that work and so on,

But I can never gain control of it. I can find coping skills that will help though.
Sometimes, I just say "forget it, there's nothing I can do", but other days I struggle with letting it go.
It's like, why can't I fix this. It's my own body and I should be able to make it do what I want it to do.

Breathing helps.
Sometimes lol!

In all honesty, I have a masters in counseling and I can't tell you how I cope with this lol!
I never said I had all the answers!
I'm learning and experiencing things too.
I can tell you that you are definitely not alone.

We can control if we actually take our medication or not.
But we can't control how it will work.
I wouldn't be allergic to nearly all the medications out there if I could control how my body reacted!

We learned at the conference that for every one problem you have, there's a 20 percent chance you'll pass that on to your children.
Well I've lost count of the problems that I have...so here's something I actually can control.

My papa used to say why worry about it if you can't fix it. He used to tell me that I shouldn't worry about things that I can't control because it'll just make me feel worse. There's no use in wasting that energy.

He's right, but when it comes to my arthritis, it's something that I have to worry about.

Or do I?

Why not just live today, right?

Oh that's right...because I'm a control freak and need a plan for my life lol!
I remember now!

Like today's uncontrollable moment, you just have to put one foot in front of the other and push forward.

Handle things one day at a time.
Control what you can and do your best to not lose your mind over the uncontrollable pieces.

I'll be here with you trying to remind myself of the same thing :)

We all lose something

Every single one of us will lose something or someone during our lifetime. 

That's a fact. 

If you go back a few blogs you'll read how my family lost 9 people in one year. 

I like to think that my brother would lose his head if it wasn't attached! 

Really!

Whether it's losing someone we love or losing something replaceable, we all lose things.

I once took a class on Loss and Bereavement. 

Ironically enough, it was the same semester that my horrible year began.

It was also one of the best classes I have ever taken.

Now you're probably wondering why I'm talking about this topic on my blog. 

Well, it fits perfectly, and you'll see why.

My professor said during that semester that the grief and emotional pain that someone goes through can be related back to a loss of some kind. She said it didn't have to necessarily be about losing someone. It could be about losing a home, a friend moving away, a pet dying, going to a new school, etc. 

She made it clear to the class that it could be anything that caused great stress, sadness, and a sense of loss.

Here I was thinking it was just about being sad that someone you loved had passed away.

Nope, I was wrong. 

One of the projects in class was to draw out our hand and write down 5 of our biggest losses. 

I was struggling with the 5th one and knew somehow that it would be related to my arthritis. 

I started thinking.

I always say I've never been normal.

But how can I lose something that I never really had to begin with?

Now I wasn't diagnosed until I was 6 years old, so we could argue that I was a normal kid for the first few years of my life. But I barely remember anything from when I was that young. I can think of a few memories, of course, but the biggest chunks of my life come from when I was older. 

I lost the chance to be normal.

I lost the chance to live a normal, pain free, no medication life.

I found my fifth finger! lol!

Also, I don't want you thinking I'm angry about this. 

I'm not!! 

I loved this class because everything we learned was so true! 

Just because I make it sound really depressing, doesn't mean I'm upset about it.

Remember, the point of this blog is not for you to feel sorry for people with chronic illnesses. 

The point is for you to see inside the life of someone who has one so you can learn more about it!

My professor loved that I put that on one of my fingers. She told me that this is something that comes up a lot in those with terminal illnesses. She said that they talk about how they are losing the opportunity to _____ (fill in the blank here).

It's interesting to me because I never thought of describing loss like that. 

One of the kids at the conference was discussing in a breakout session how he lost the chance to be a kid because he was having so many health issues. He couldn't just go out and play because he couldn't walk. He talked about he became depressed and angry.

This got me thinking of the stages of loss.

We learned about this in class as well!

You see people talk about this a lot when someone gets diagnosed with cancer or a terminal illness.

They go through the stages of loss.

This also applies to any form of loss.

Those who are diagnosed later in life experience this more than those who are diagnosed when they are younger. 

I do believe both go through the stages of loss at some point in their lives though.

It's harder for those who get diagnosed at an earlier age because their whole world is ripped out from under them. They now have to change everything and we all know how much we love change!

Those who are diagnosed at a young age grow up with it. It becomes just another thing they have to deal with, just another part of life. 

Getting diagnosed, losing someone, or experiencing any type of loss is difficult to go through.

That's why understanding the different stages of loss and grief make it easier, at least for me, to get a grip on the situation. 

Knowing where you're at, makes it easier to find things that will help. 

I think I met a lot of people at the conference who were in the bargaining and acceptance stage.
I know I go back and forth between the two all the time.

What's the meaning in all of this?
Why do I have this?
How can I reach out to others like me?
Heck, I have a blog to tell my story.
Moving on and realizing that I can be more than my disease.
How can I help others?
What's next, how can I use what I've learned?

All of these questions and thoughts were being discussed during the young adult sessions.
I was able to hear that others really felt the same and understood what it was like to lose something that we never really had to begin with.

I might have lost the chance to be a normal kid, but I've gained so much more than I would have had I lived a normal life.

We're all Buzzed

And before you ask, no, it's not the good kind of buzz.

I didn't think about describing pain like this until after the conference. It's really the perfect example of what we feel like on a day to day basis.

I can't take credit for this thought though. It was said by Ana Villafane during one of the breakout sessions and everybody in the room related to it.

She was saying how we all have a daily buzz, like a certain of level of pain we deal with daily. Then, during that day or when you're having a bad day there will be a spike of pain.
Imagine a heart rate line if you're a visual person.

Not many people seem to realize that this is a daily occurrence. While we may look okay and act okay, our bodies may not feel okay.

We are really good actors!
Or at least try to be.

So we are constantly dealing with this buzz of pain that never seems to go away.
At this point in my life I don't really notice the buzz anymore. It's like the sound of the air conditioner, it becomes background noise that you don't pay attention to anymore.

That's just me though.
Everybody is different.

I do believe that we have higher pain tolerances because of the constant buzz that we deal with.

I'm pretty proud of my high pain tolerance!
You've gotta find the bright side somewhere, right?!

It's the spikes that are hard to deal with.
When you get so used to the idea of "normal" being a certain level of pain that the change catches you off guard.

You know you can handle it because you've done it before, but it's almost like you've got the feeling of "I have to deal with pain on a daily basis, why do I have to deal with hurting even more".

Bad days are called bad days for a reason.

I remember about 2 or 3 years ago we were changing my meds because I had plateaued and it just wasn't helping anymore. I flared constantly. My buzz wasn't a buzz, it had flipped and I was just spikes all the time.

I can remember one day just breaking down and having a total temper tantrum at 21 years old.
I was sitting on the floor in my closet because I didn't want my roommates to hear me crying. I probably couldn't even help myself get up off the floor anyway lol!

I slapped my closet door because I just wanted to feel something other than the pain I was feeling at that moment.
Maybe it was the idea or curiosity of whether I could feel more pain than what I was experiencing.
I'm not sure.
I know it probably doesn't make sense to you, or it might.
But when you have moments like that where you feel pain all the time, you just need something to reassure yourself that yes, you are normal.

Don't worry, my hand was fine lol!
I didn't even have the strength to slap it hard which is the funny part!

Half the time it's not the pain that gets you.
It's the emotions associated with the pain.

The weakness, the feeling that this will never go away, the "why me", and the thought of just giving up.

If the pain wasn't enough, you've got the mind games that come along with it.
I hate the saying, "mind over matter".

No matter what I'm thinking, what I tell myself, or what I believe...the pain is still going to be there.

I could be having all of those negative thoughts and it won't change the amount of pain I'm in.
It can make me feel like crap.
It can make me depressed.
But it doesn't make the pain go away.

The same goes for positive thoughts, which I do my best to think!
These thoughts are better! When you're having a bad day it's easy to let the negative thoughts take over. But you have to let the angel beat the devil on you shoulder.
"You are strong"
"You can handle this"
"Don't give up"
While these are wonderful and the counselor in me applauds all of us for thinking of them, it's not going to change the amount of pain we're in.

That's why I dislike "mind over matter".

So you have the emotions, the mind games that come with that, and then the pain.

That's what you get on a bad day.
Plus whatever you have going on in your life at that time lol!

It sounds fun doesn't it?

Don't think that every flare or spike is like that though.
Some days aren't as bad as others.
I gave you an example of a really bad day just so you can see where our minds might wander from time to time.

Some days when we spike we just might be in a crappy mood!
In which case we just act like moody teenagers lol!

Just understand that we do, for the most part, have a constant level of pain that we experience.
We are buzzed all day everyday ;)