The Little Engine That Could

Today marks 2 years of no prednisone. 2 years. It blows my mind. I think back to the spring semester of 2016 and I remember the withdrawal symptoms like it was yesterday, click here for the 1 year anniversary post.

The turbulent highs and lows of my mood (I'm still apologizing to those around me for that), the angry thoughts I had about myself ("you suck", "you're weak") and my situation ("you're totally an imposter here and they all know it"), the dizziness (the whole room was spinning at one point), the feeling that I would never get better (one of the few thoughts that still scares me). 

But I did. 

Just like I’ve gotten through each hospitalization, surgery, medication symptom, family death, School obstacle, and daily stressor. 

You get through it. 

We get through it. 

This year has been one of the hardest, mentally, that I have ever been through. 

We all have those, I get that. And each year brings new challenges that we all must face. 

2014 was emotionally challenging, 2016 was physiologically challenging, 2017 was mentally challenging. 

This past year challenged me to push myself in a way that I never had. I wrote a document that was 80+ pages (you would think I would remember the number with all the time I spent on it, but once you pass a certain point, keeping track no longer matters), I defended that document, I added another chapter to that document (100+ pages), defended that, then applied to internships, and now interviewing for those internships...all while taking a full load of classes, working at 2 practicum sites, and having an assistantship. Now, I’m just giving you the cliff notes version and I’m not looking for a pat on the back here. Literally every Ph.D student goes through this and my experience isn’t anything super special. I’m just writing this out in hopes that I will finally believe that this past year I actually accomplished something. 

Yep, still not there yet. 

I wanted to quit so many times. If you read my last post, you’ll understand where my head was at. I wasn’t in a great state of mind. 

But I got through it, even when I thought I couldn’t. 

I can see the light at the end of the tunnel. Only a few more educational obstacles left, but the feeling like my hard work is finally paying off sure does make it all seem worth it. 

Just like experiencing those withdrawal symptoms from over 9 years of prednisone have led me to becoming healthier. I mean, it only took 2 years and a knee surgery, but I’m working out at least 3 times a week, I’ve changed my diet, and I'm listening (sometimes) to my doctors. 

I don’t know what type of challenge 2018 will bring. Maybe I’ll finally see just how badass I am (wow, that sounds super cocky when I write it out. Y’all know my brother got that gene and not me, right?) or maybe it’ll continue to mold me Into the person I’m meant to be. 

Whatever happens, I know one thing. 

I’ll get through it. 

I know this one is short and I haven't written since June, but stay tuned, one of my goals for 2018 is to write more. That being said, I have a few different blog ideas in the works…they might come from my own site or they might be through a few other professional sites. Don’t worry, I’ll be sure to share them either way! 

At what cost?

I've been thinking about a lot of things lately: my health, insurance, school, money, my future, and the list goes on and on. Lately, they all seem to be blurring into one huge stormy raincloud. Thankfully, my health is stable right now. But the rest are just a huge "I don't know".

Let me start by saying that I haven't been myself lately and I'm not quite sure when that'll change. The point of this blog was for me to talk about things affecting my life, both Arthritis related and not, and part of me doing that is being honest.

That being said, I haven't been myself lately because of the factors listed above.

School is insane. I'm not going to go into it because I feel like a broken tape player that keeps replaying the same song over and over again. To sum it up, I've been working on a huge portion of work for months now with no idea if it'll even matter. That means that until the higher ups feel that it should matter, I have to stay where I'm at in the program (Here's where my future comes into play). All while still working for the higher ups on literally everything and anything else they can think of. That's just the dissertation part of it, then there's classes, practicum, and work.
To sum it up: I feel like I'm on a treadmill and I've got this paper that says "PASS" in front of me on a string and I keep running towards it, but I can never reach it.

Insurance and Money go hand in hand. I had a meeting today with this guy about health insurance because I get kicked off of my parents in August. We've always known that this was going to be something we all were going to hate. Well, we were right. It's insane to me that because of my preexisting condition, I have very limited choices. Turns out I'll be paying around 400-500 a month for health insurance....oh and that doesn't cover my shot which is a speciality drug either...or dental....or eyes. And yes, I know what you're thinking: most insurances don't. Well, see, because of my wonderful preexisting condition and all the symptoms that come with it, I have to see a dentist and eye specialist every 6 months. So that we'll figure out later. Back to the shots, my shot is around 1100 dollars a month I believe, you can ask mom if you're really interested. The insurance that I will have only covers half of that. So what's 400-500 + let's say another 500....that's 900-1000 dollars a month. FOR HEALTH INSURANCE. Thankfully, I have a wonderful family that are able to help me with this cost. They wouldn't let me put a craigslist ad out for "Marriage for an insurance card", so instead they are doing what they can to help me. Being a student I barely make 400 a month as it is, not to mention rent, food, gas, electricity, and student loans only cover so much. This makes my brain go crazy though. What about those who are like me? Who are worse than me? How do they get their medications, let alone be seen by a doctor at all? We need better options, we need more options, and we need cheaper options. And having a preexisting condition shouldn't matter either way.

I was asked by the higher ups not to long ago if I had considered delaying a year in the program because the higher ups were worried about my mental and physical health, and quality of my dissertation, not that this was an issue, but simply a "precaution" and if you ask some, a conspiracy...but that's another story for another time. Side note: this was the spark that started the downhill ball of flames. I respectfully asked if there was a reason for me to do so and when there was no reason stated back to me, I responded that I could get the work done and I have done so thus far without a problem. "But at what cost", was the response I got.

That stuck with me.

It still echoes in my head at night.

At what cost.

That's always the question. And the answer every single time is: Everything.

This dream I have of pursuing my doctoral degree would be nothing if I did not put everything I had into it. The same is said if I'm held back. Nothing is going to change except the cost rises because then I'll have to pay for my insurance longer than I would if I matched with an internship site and got it through them. Oh and my level of stress because I'll still be in the same hamster wheel.

A dream is not a dream if you don't fight for it. It's not a dream if you don't put every bit of energy, blood, sweat, and tears into it just for a shot that that dream might come true.

Yes, I realize i'm talking about school. However, if you were in my head right now, you would see that this is how I'm having to think about it.

I care about this work, I care about the people around me, and I care about doing my best at my job.

I'm doing everything in my control, which is very little, to get my part done. That way, if it crumbles to the ground, I can walk away knowing I did everything I could.

I'm currently working at UF Shands Trauma One Center in Jacksonville as a practicum site. I'm driving there Tuesdays after class and I'm coming back Wednesday nights. I can't tell you how grateful I am for this experience. It couldn't have come at a better time, honestly. Being there is a daily/weekly reminder of what I want to do, the setting I want to do it in, and the people I want to work with. I'm working with individuals at their lowest. They are torn a part, broken, beaten down, and some, some have had everything taken from them in a split second due to something as simple as falling down and hitting their head wrong. Seeing the rawness, the vulnerability, and the resiliency that people have is amazing and life changing. This is why I haven't given up. This is why I keep pushing forward. My stress right now is nothing compared to theirs. I understand that everything I write about is something that everyone experiences and that it's just my turn to go through it. That doesn't make it any less sucky though.

My mentor who just left me to go live life on the west coast told me once, "You've got to remember why you're doing this, that'll get you through it".

So, again, at what cost?
Everything. Because I know what I'm meant to do and what I love doing, therefore I'm going to give it everything I have to reach that dream. It might not feel like it's going to be ok, but it's gonna be what it is and I have to be okay with that.

One big family

I just got home from getting my stitches out and I'm sitting here on my bed with so many thoughts in my mind. I've got a running to-do list, ideas for blog posts, things I need to be doing but I'm not, people I should text to see how they are, and the list goes on and on.

It's hard to stay afloat.
I know everyone feels this way in their own lives, I get that, I know that.
But why is this feeling a constant feeling I have?
Stay tuned for my next blog post.

Amidst these feelings of treading water in my own life, I'm also thankful.

Two weeks ago tomorrow, I had surgery on my knee. Now, I know that this wasn't some big ACL tear fix or anything like that. However, any surgery is big when it involves an arthritic joint.

What was supposed to be a 15 minute surgery, was an hour and a half long.

I'm not going to go into details, but the joint was cleaned up, a cartilage tear was fixed, and my plica (A plica is a fold of synovial membrane most commonly in the anteromedial aspect of the knee. Plica are present in about 50% of the population and are thought to be the remnants of embryonic connective tissue that failed to fully resorb during your fetal development. Luckily, most plicae are asymptomatic) was removed.

The pictures are pretty cool too!

I gave myself a few days rest (2 to be exact), then began working from home. I had to walk on it and actually walked about 30 minutes after I awoke from surgery. I couldn't drive though.

During that next week, I was amazed and incredibly grateful for the amount of people that helped me get from place to place. My parents drove me back to Tally, helped me get groceries, and made sure I was set up with all that I needed before they left. But because they had to work and I couldn't miss school, I relied on my amazing friends to help me out.

I had people taking me and picking me up from school and work. I had friends driving me to target to get bandaids, one that came to pick up papers for me that needed to be dropped off, and one came to me because I needed something notarized.

For FIVE days, my amazing friends went out of their way to help me.

It goes to show that even though horrible, terrible things happen in this world, love is still around.

These friends have become my family away from home and I'm forever thankful for all that they did during that time to help me (and all that they still do)!

This program is rough, in every sense of the word, and I can't imagine how I would have gotten through this week had I not had help.

We truly are one big family and whether it's nights of complaining about the program or driving around Tallahassee, we are there for each other.

Thank you :)


Now let the fun PT adventures begin, UGH! I hate PT. Get ready blogging world, I feel some hot thoughts coming on lol!

The big 3

I'm sitting here trying to find the words in my brain that can describe the emotions that I'm feeling. You would think that being in the field I'm in that this would come easy to me. But talking about you, thinking about you, is never easy. This semester has been the hardest semester of my life and having this day fall in between two extremely important defenses makes it almost unmanageable.

Three years. It has been three years since I've seen your face or heard your voice. I was thinking about it this morning, does it truly get easier?

I know last year I wrote you a letter. I guess that's my way of coping or an attempt at coping.
For those of you reading that need some background information, here you go:

http://ribbonsbowsandhospitalbracelets.blogspot.com/2016/04/34.html

This year I'm just going to talk to you, like you're sitting here on the couch with me in an apartment you've never been in. If we were back at your place, you'd be in your chair in the corner watching everyone around the room with a smile on your face because you were just happy to be with us.

Even though you aren't here, I see you everywhere. Just the other day a beach boys song played and I stopped to think about all those times you drove us to baseball practice with their CD blaring in your truck. Every time it's a beautiful day and the sun is shining, I think of how much you would love to be at the beach with us.

You remember a few weeks ago when I went home for Easter and we were all outside watching Adele play? I could almost hear you laughing because Delayney was acting just like Michael when she didn't want to wash the dog off!

You were there. You're always there.

You're there every single time I doubt myself in this program. Every time I want to quit because I'm stressed and I have zero confidence in myself, I think of that day. You know the one! The day that I told you I got into the masters program here at FSU. I told you it was time you returned to your roots and rejoin the seminole tribe, that Michael could share you cheering for both teams now. I handed you the seminole hat and the look on your face. That look keeps me going.

This week has been hell and the only thing keeping me going right now is how proud you were of me that day. I don't want to let you down. I won't let you down.

I truly wish you were here right now. I could really use a candy run! You know, that's a good idea. I'll take the girls for one this weekend. We talk about you all the time, you know Roxy is turning out a lot like me and you. No, that's not a bad thing. But I swear she's just as stubborn as us!

I can totally hear you right now asking me why I'm crying. You know why, so don't make me say it.

I'll give Michael a hug from you and the girls, mom, and aunt Kim a kiss. I'll call and tell Mommalaine you love her and that you're proud she's still taking those traveling adventures.

Don't worry, we know you're here with us, always.
I love you, 3.

Today is a Monumental Day

Today is a big day. No, I’m not talking about the Country. No more talk of politics for me right now, I’m exhausted from it. 

Today is a big day for me. 

Big doesn’t begin to describe it. Monumental, that’s better. Today is a monumental day for me. 

Today marks the one year anniversary of no prednisone.  ONE WHOLE YEAR without taking a single milligram.

Now, I know you’re probably thinking, “why is she celebrating this?” or “I really don’t get why she’s so excited about medication”. 

Go back and read some of my old posts and you can kind of get an idea why I’m so excited.

I’ve tried many many times to do this before and I’ve never lasted more than a week.

I still feel like it won’t mean as much to anybody other than me, but that’s okay. 

I’m not going to let anyone stop me from celebrating!

This was something I never thought I would be able to do.

So much so, that I literally told my Rheumatologist: “Good luck trying to get me off 1 milligram, my body can’t do it. I’ve been on it for over 9 years now and it’s yet to be done”.

She told me we were gonna try anyway.

January 20th, 2016 I woke up and did not take my 1mg pill. That was day 1. 

I went through hell. Mentally, physically, and emotionally. 

My body had gotten so used to having something, that it did not know how to function without it. 

My body had to essentially learn how to remake the pieces that the prednisone replaced. 

I was moody; high and low, depressed and angry, and exhausted all the time.

It was a really bad first 6 months. 

And I’m not exaggerating, you can ask anyone who was around me during that time and they’ll be happy to tell you! 

After that, I was somewhat back to normal. 

I still, to this day no lie, struggle mentally.

Let’s take a few weekends ago. I woke up and could barely move. I laid in bed all day watching Bridget Jones and cuddling with Adele. I was hurting everywhere. The old Kara could have gotten up and popped a 5mg prednisone and would have been fine in a few hours. The new Kara knew that she could easily do that, but had to force herself to forget that the pills were there because she didn’t want to relive the first 6 months again. I find myself sometimes craving a solymederol drip (liquid prednisone) because I know I’ll feel that instant gratification of no pain. Like, if I could just go get an IV, I know I would feel better. But I know the withdrawal would be worse. 

Knowing you’re in pain and have the medication to stop it, but not allowing yourself to take it….that’s a struggle. 

Constantly outweighing the pros and cons of the steroid and how healthy your body has become since being off of it, are all things that go through my mind.

If you’ve ever taken it, you know the effects…now multiple that by 9 and you have me. 

I see that I’m better and that I’m able to handle what pain I’m experiencing. 

If I had known then what I know now, would I have tried to stop sooner? 

I honestly couldn’t tell you. 

I’m have a great list of medications that I wasn’t on before. My doctor actually thinks I’m under-medicated which I think is funny!

But everything happens when it’s supposed to happen, I trust that. 

“Kara, why do you still have the pills?”

I still have them incase there’s an emergency. Incase I wake up one day and I’m too sick to handle something myself. 

I can never allow myself to be unprepared for something. 

My immune system is too unpredictable for that. 

Especially knowing I have a history of unpredictable hospitalizations!
I guess the little pill bottle has become my safety net.

Only there for emergency situations!

Hopefully, that never happens.

But really, one year.

I’ve been able to go one year when I’ve never lasted more than 7 days. 

I still can’t believe it! 

The Confidence Chronicles

It's currently 5:30 on a Thursday evening and I've already showered and climbed in bed. If it wasn't so early, I would have already taken a benadryl too.

That's the perks of having a compromised immune system; rashes and extreme itching will come out of nowhere and stay for days.

Don't know why.

And yet, I lay here and find myself either wishing for it to go away or for it to get worse because that's the only two options I have.

Adele is sitting here looking at me, wondering why we aren't on the couch or outside on a walk. Thankfully, we had a puppy play date this morning!

It's amazing how less stressed I am with her around. I don't think people understand that the security of having her with me is the number 1 thing I love most and appreciate most about her.

Life has been crazy since I've last written and it'll be like this for the next year.

But one thing that happened this week has stuck out more than anything else.
I had my supervisor tell me something that caught me off guard.

He said, "I'm going to ask you a personal question. Do you think you're intelligent?"
I paused and so many thoughts rattled in my brain.
Where is this going? Did I screw up a session? Does he not think I'm intelligent? Is this a trick question? What do I say, do I tell him the truth? Really, where is this going because I cannot read him right now?

And because I was caught so off guard, I said in grand Kara fashion, "Well, I wasn't in gifted and talented when I was in school" and he laughed and said, "that's not what I asked"

I sat there and after a minute I finally said, "It depends on the day"
He said, 'That's what I thought"
Once again, I'm sitting there with absolutely no idea where this is heading and he begins to ask me another question.

He says, "what makes you a good psychologist?"

Well damn. There goes my easy supervision session out the window. Here I am thinking that maybe he'll tie in the intelligence thing with following my gut in session and we'll wrap it up and I'll go on my way.

Nope. An hour later and I come out of one of the best supervision sessions I've ever had, completely blown away.

Now you're probably wondering what was said in response to the questions and I'm not going to tell you everything, but I'll tell you what's applicable to the post.

It came around full circle, back to the intelligence question. He wanted me to know that he thought I was an intelligent person and that's one of the things that makes me a good psychologist, but that he knew I didn't fully believe I was an intelligent person.

Basically, he wanted me to know that he knew what the little voices in my head tell me all the time.

He said, "you're an intelligent woman and I want you to grow into the person, the intelligent psychologist that you already are". And yes, that's word for word because he made me write it down.

He also told me that I needed to figure out what was holding me back from truly believing it, which is why I'm sharing all of this with you.

Any given day, my anxiety or health can get the best of me. But after 25 years, I've learned to become a good actress. Like, I bet none of you knew (the ones I didn't tell) that I have literally been dying to scratch my skin off for over 6 days or that I haven't taken my muscle relaxer in 5 nights and my hands are so stiff I could play the perfect robot right now. And if you could tell, you need to let me know because I need to up my game.

I've become an imposter.

I bet you know where this is going now!

You could walk into a graduate classroom and ask if anyone has ever felt like they don't/shouldn't belong and I bet you 10 dollars that every single hand will go up. Every. Single. Hand.

Within the last week, I can't count how many times I've had conversations with people and this has come up.

The imposter syndrome.

It's real!

When successful people don't feel that they are smart enough or feel like all of their success is due to luck and not hard work, they begin to feel like an imposter.

You can ask me one day and I'll say I love being here, I truly feel like I belong, that I'm proud to be a doctoral student, and that I feel like I know what I'm doing.

Ask me the next day and I'll tell you I'm losing it, I have no idea what I'm doing, I hope I passed that exam, I hope I can make it through my milestones, and graduate on time before they realize I know nothing.

But I don't know nothing. I'm an intelligent woman....or so my supervisor says. No, I am. I think?

It's the struggle to believe that you belong constantly fighting the thoughts that you aren't good enough.

Who put that in our heads?

Did you know that the National Center for Education Statistics reported that 5% of graduate students reported having a disability. Did you know that only 31% of students with disabilities who graduate high school even go to college?

So you might read that and think, "oh my gosh that's awesome, you've made it so far" and I'm sitting here thinking "only 5% make it, you're going to fail, you're going to get sick and have to leave, you aren't good enough to be in that 5% because what have you done to get here, now you're using your disability as an excuse, you need to stop thinking that you're qualified to be considered in this category, you know nothing jon snow"

Those are the thoughts that I have.

So I put those thoughts in my head. I put pressure on myself to be perfect, to succeed, to make a difference, and to prove that my professor made the right choice in admitting me into this program.
I'm the one comparing myself to others and allowing myself to feel like an imposter, when in reality, I deserve to be here. I put in the work, the time, the tears, and the money.

I am not an imposter.
I am an intelligent woman.
She says confidently.

Or is that just the imposter speaking?

I guess that's just something I still need to figure out, stay tuned for more!

The struggle bus is real.

I must admit that while these last few weeks have gone great, there is one thing that I experienced that I must write about. In my 25 years, I can count on one hand the number of times that my disability has been questioned or I've received looks/comments/judgement from others. And to me, that's not a lot! Many people have experienced this and it's time I talk about it. I know in one of my earlier posts I've discussed looks I've gotten for using my handicap sticker, but this is taking it a step further.

It's no lie that I've struggled over the years accepting my arthritis as a disability. I still have days where I don't like to admit that I have it, but I've come a long way from crying about it because I was angry to writing a blog informing others. I've grown and so has my ability to accept that arthritis is a part of me.

Over the last few weeks, I've gone back a few steps in terms of struggling with whether or not I deserve to have Adele. Everyone I met at training was wonderful, respectful, and amazing, so it's nothing against them or the experience I had with them. But I'd be lying if I didn't say that the first few days were a bit awkward. Now I'm one for always loving the idea of people asking me questions about my arthritis. Go for it! I'd rather you ask than stare....and that's what they did. I appreciate that! I just could not get my brain to turn off though. I wasn't flaring during the training, with the exception of one day in which I did not feel great, so to others I looked like a normal able bodied person working with a service dog. Throughout the week, I received questions from volunteers, people at the mall, and even people after training that I would run into asking if I was training Adele and why I had her. I even had 3 people ask me if she was a seeing eye dog lol! Now, these are simple questions that were not meant in a harmful way, I understand that! But for someone who was already struggling to accept that she deserved this, it made things a bit more difficult.

I made it through the interviews and the paperwork, but no matter how many times I told myself I wouldn't be here if they didn't think I was worth it, it still didn't register. All because I wasn't sick at the time. Which really doesn't make sense. During my on site interview, I was flaring, so they were able to see what it was like for me. For that, I am grateful. It wasn't until this past week when I couldn't bend the fingers in my left wrist and I couldn't fully bend my left knee that I truly felt deserving of Adele. She helped me reach a few things that I had dropped and she turned on the light for me when I sat down and couldn't get back up to do so. I knew before the training and I know now, but I'm not sure what happened in my head during the training. I guess I was the only one doubting myself.

I know this probably doesn't make sense to any of you, but if you've ever had to defend the fact that you have a disability, you know that the hardest one to believe it, is you. I've had it 19 years and I still struggle with it! Gotta love having an invisible disability lol!

I would love to say it was just me going through this, but another man in my training experienced it as well. He actually gave me the idea for this blog post. He came into class one afternoon and said, "you'll never believe what a volunteer just said to me". He went on to tell me that she said he didn't look like he needed a dog. I was shocked. She didn't mean any harm by it, it was just the way she said it. I asked him what he said back to her and he said he was blindsided so he just briefly said that he was here because he needed help. I think he may have mentioned his disability to her before he got up and walked off. He said that we needed to have go to responses for people who say comments like that! I thought it was a great idea! So here are 5 go to's that we talked about and that are actually pretty common...

Things not to say to someone with an invisible disability and how to respond to those who say those things:


1. "But you don't look sick"
Thank you, I am very grateful that I've been able to remain active by taking my medication and continuing to exercise to keep mobility in my joints. I have my good days and my bad days!

(You never want to get an attitude with your responses because it can turn the other person off to anything you say. So try your hardest not to give a sarcastic response!)

2. "So have you tried ____, it really helped my great aunt's ex husbands brother?"
I have, thank you for suggesting that.

(literally leave it at that. Or a "No, I have not! I'll have to look into it". Simple answers with this one or they will go into every detail about it, where to find it, and how much it helped their relative)

3. "Were you just faking sick, or do you really have a disability?"
Nope, nope, I really have a disability.

(this one is tough for me because I've been asked it before and I lost my temper. It happened in high school after coming back from months off and my ex's best friend said this to me and I think I responded, "were you dropped on your head as a baby, or are you just this ignorant". I don't think I've ever been that upset before. I've grown up a lot since then, but that was one of those moments that if you're blindsided, you can react in a way that you wouldn't normally react. So just keep the answer short and sweet...oh and know that it has been asked before!)

4. "Wow, you're not old enough for that"
Yeah, I was diagnosed at 6. There are actually 300,000 kids diagnosed with JIA every year.

(By throwing in a fact or important detail, it allows the person the chance to not only learn something new, but it takes away the chance for them to question your credibility...yes people actually do that)

5. "Why do you need that handicap sticker/service dog?"
Well, I have a disability that requires me to need assistance and by having these things, it helps me.

(Technically if a business is asking you about your service dog, they can only ask if she is one and what kinds of commands does she do. Most people aren't this blunt and won't ask the question this way because it's rude....but it does happen. This is also one of those moments where you want to give a sarcastic answer, like why do you need that extra slice of cake...but don't give in!)

Now always remember that it's not what you ask, it's how you ask it. I know that the majority of people I talk to are innocently asking because they don't know and would like to learn more. And I'm always very open and kind in the way I respond. So just be mindful of how you ask and answer the questions. Nearly all of the above can be asked in a nice way or you can change up the sentence and it can have a completely different meaning.

And when you want to know, always ask! :)

Next stop on the struggle bus: School's back!