Tuesday, December 15, 2015

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.


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...
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!

Sunday, December 6, 2015

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!