Spring Cleaning

I've only really posted about this topic one other time because it's not something I normally dwell on. But in light of today's events and the greatness that is the post-steroids kara, I thought I would share my current thoughts on the issue.

Here is my other post and most of it hold's true:

http://ribbonsbowsandhospitalbracelets.blogspot.com/2014/01/the-perfect-fit.html

However, when I went back to read it I laughed at how happy and optimistic I sounded.

Don't get me wrong, I'm still those things, just a little bit more realistic.

I came home from class today and for some absurd reason I thought I would try on clothes in my closet. I wanted to go through and see what dresses would be good for practicum and since it's getting warmer It would be nice to have some on hand.

BAD IDEA.

This was one of those times where I wish I had a roommate to come in and slap me across the head.
Needless to say, thirty minutes later my closet was half empty in a bag on my floor and I was doing a blogilates workout. All while my inner monologue was telling me how fat I looked and how much weight I've gained since I got this dress and those pants and that skirt.

Now let's pause and rewind back to spring break.

All I wanted to do was to go fish. Did I get to do that? No. Why? Because four of my days were spent at the doctors office getting allergy tested and told that I was doing great off of my steroids. And when I wasn't at the doctor's office I was laying in bed because the stress from school had caught up to me and made me so exhausted I didn't even want to move.

In 3 days, It'll be 2 months that I've been off of the steroids.
The doctors say "Oh, you must be feeling so great!", "oh you're only flaring a little bit", and "oh you're going to be so happy now".

Nope. I feel like crap. It takes me an hour each morning just to get my body ready to get ready for the day. And happy is one of the 102 moods I feel during the day and it certainly isn't the frontrunner.

Yes, overall steroids are bad for you.

But as you can see in my other posts, it's hell getting and remaining off of them.

Back to the story...

So now, I'm laying on my heating pad writing this because it'll take me a little over an hour to get moving in the morning (no I'm not exaggerating) because I felt so self-conscious about my body that I felt the need to put myself in more pain in order to attempt to feel better about myself.

Does that make sense to you? Because to me it makes sense, but it shouldn't have to.
You get where I'm going here?

I shouldn't have to feel bad about my body or the way I look or the fact that I haven't lost any weight since getting off the meds like I thought I would.

I shouldn't have to, but I do.
And I know part of that is due to my newfound thoughts since being off the medication.
Being in more pain means feeling more emotions.

I get that.

But what about the girls who don't have the excuse of having a chronic illness?
What about the girls who are on medication and still feel like crap because they can't fit into the outfits displayed at the mall?

Society does a great job about telling us we need to have better self-esteem and feel better about our bodies, yet they expect us to look like Victoria secret models.

And now, the hot new topic is prescribing less pain medication and focusing on becoming more active, losing weight, and trying to eat healthier.

I'm slowly starting to walk a little bit each day because I know I need to start off exercising slow. I get that. I know it will help. I also try to eat healthier.

But what if that doesn't work?
Then what?

What if that's not the reason I'm in pain all the time?

It's a constant battle with trying to feel good in your own skin and taking care of your body, but how can you do that when you don't even feel good deep down in your bones?

I know that every girl has thoughts like this at least once in their life, so I don't feel so different writing about it.

But as one of my best friends told me tonight, it's time to empower each other into not feeling so pressure by others or society. So I challenge you to do that the next time you feel crappy cause your shirt's a little tight or the next time your friend says she looks fat. Tell her she's beautiful inside and out and it's not about how you look, it's about how you feel in your own skin.

Then, maybe we can begin to change a few things in this world by starting with ourselves.

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 hate....how 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.

http://themighty.com/2016/02/25-secrets-of-people-with-chronic-illnesses/

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!

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!