If I knew all the words

I pulled out a hand full of my hair in the shower yesterday.

I lost it.

I sat on the floor with the water running over me and cried while I held onto what was still there.

I won’t lose it all. but as i stood there with it in my hand I realized what I was going through,  it’s bigger than me.

I can’t stop what’s happening. I cannot control it. I have to let go of the control and embrace that what is going to happen is going to happen.  I have to have faith that it will help me for the better.

I’ve been noticing lately how thin it feels, my hair, when it’s up or in a pony tail, when i curl it; it doesn’t feel the same. it won’t ever be the same.

nothing feels the same any more.

nothing tastes the same any more.

Things are changing. The drugs are slowing down my body. The drugs are breaking me down not just physically, but mentally.

I’m taking the ultimate beating.

For the past 8 days I have been unable to eat anything other than Saltines and Ginger ale. My body is getting back at me for the torture. It’s starting to ware me down. I feel weak and tired constantly.

I gotta shake this feeling, this state I’m in. I can’t control what’s happening to my body, so I must let go.

3:29 a.m. I woke up shivering. I had kicked my duvet off in the middle of the morning. I reached down to pull it up and my hands couldn’t close enough to grasp the covers and pull them up over me.

I felt the knuckles on my left hand and they were hot and swollen. I rolled over and grabbed my sweatshirt off the floor.

5:06 a.m. I couldn’t take it any longer I hadn’t slept, so I got up. I had to pull the knob to the shower out with two hands. And now I remember why I bought shampoo with a pump, because I can’t squeeze  a normal bottle.

5:31 a.m. Lay back in bed and pray my hair air dries fast because I can’t grip the hair dryer, let alone a brush.

My hands are useless.

5:57 a.m. hobble down the stairs to my car, glasses on, no make up and wet hair. Can you say “hot mess”?

It’s been 24 days. August isn’t an option at this point. Placebo isn’t an option at this point. I don’t think I would make it if I end up on placebo.

6:24 a.m. I sit down at my desk in the dark alone and I  pull the sleeve off of my coffee and wrap my hands around the cup  letting the heat loosen the aches and pains of my hands. I relax, a little.

9:30 a.m. a check in with my supervisor. I grab my planner and stare at my pen for a minute. Is it worth it? Am I actually going to pretend like I can get my hand to mold itself around the tiny frame of a pen? Now I’m wishing I had a second cup of coffee so I could retain more without taking notes. Two hours of sleep isn’t helping much. We’ll see how this goes. I grab the pen anyways, gotta push through.

11:49 a.m. my desk phone rings. It’s a local number. It’s the trial coordinator. I was due in at 4:45 for a TB test. She’s probably just calling to confirm. Wasn’t expecting her to ask me to come in earlier. Actually as soon as possible.

“Could you get in as soon as possible” are never words you want to hear from your doctors office.

12:00 p.m. Client call. My eyes are glazed over. fear has set in.

12:37 p.m. The trial coordinator grabs me from the waiting room and puts me in the back exam room.

12:41 p.m. In walks my doctor. She sits and gives me that look. She tilts her head and gives me a good hard look. My blood work came back and my Rheumatoid factor was extremely elevated and my anti ccp was positive.

Both are biomarkers that my diagnosis may be incorrect. Instead of Psoriatic Arthritis (PsA), I may in fact have Rheumatoid Arthritis (RA). When I was first diagnosed they weren’t exactly sure what I had I show physical signs of PsA, but my blood work leans toward RA. But gave me an RA diagnosis because there are more treatment options available. Then my tests came back showing it looked more like PsA. I’m in a small group of people who technically have both RA and PsA.

The trial is for PsA and my blood work is indicating I have an active inflammatory disease.

Therefore, I’m no longer eligible for the trial.

My heart sank. This was my shot at a viable treatment option. I felt so defeated. So lost.

Arthritis has such a stereotype attached to it. You wouldn’t expect to walk into a Rheumatology office and see a 25 year old female sitting in the waiting room waiting to be seen. When you think of Arthritis you think of Alieve commercials with a grandmother gardening. Be honest, it’s the first thing that comes to mind.

This disease has held me back from doing so many things in my life. It’s plagued me with chronic pain and fatigue. I have not lived the life most of my friends have lead. And that makes me sad. I’m not hoping for a cure. I’m hoping for a therapy that works for me. A therapy that makes me feel a fraction better then what I feel now. Anything is better than this pain I’m in.  I just want something that can help me do every day things without being in pain.

This trial was my first shot at that.

I’m disappointed to say the least. I was ready to push through and give this a shot. The unexpected and the unknown of the trial was exciting for me.

But this won’t destroy me.

I’m not going to give up.

It’s going to take some fight.

But,this disease will NOT destroy me.

Thursday was my first appointment for the clinical trial.

Mostly lots of paper work, blood work, a physical and the dreaded joint count.

I had called ahead to say that I was actually feeling better than expected after two weeks of no therapy and maybe we should postpone a week. I didn’t feel like they were going to get a good reading on my joints. But they still wanted me to come in.

After walking the trial coordinator through the past seven years of having this disease one of the nurse practitioners came in to do my joint count. Now I typically have a joint count at every appointment, no big deal.  Although, I typically am on therapy so that was the one factor I didn’t take into account. I may be feeling descent, but it wasn’t until the nurse practitioner dug into my joints to feel for swelling and my eyes rolled back in my head in pain.

At that moment I jump out of my skin in pain, it takes me a moment before I’m able to utter the word “tender” as the instant achy pain sets in.

This happens 71 more times before the torture ends.

When she is finished I can barley put my sweatshirt on and get off the table I’m in so much pain. I guess I really was in pain and I’ve been pushing so hard through it I haven’t really felt it.

We then proceed to walk over to the hospital for a chest x-ray and I’m done for the day. Back in on Tuesday for a TB test.

But now all 72 of my swollen and tender joints are now aggravated I can do nothing but think about the pain as I climb the stair case to my apartment. All I wanted to do was lay down and never move again.

I had trouble walking and typing on Friday my hands were so swollen. I didn’t leave my apartment all weekend because I couldn’t move.

With the trial there is an early out option after week 16. I can drop out at any time, but if I make it to week 16 and I know I’m on the placebo at that time I can ask to be re-randomized for the drug. Week 16 falls the first week of August. It feels like an eternity away.

My only fear is that I won’t make it that long.

I usually think in worst case scenarios. My family can attest to this. But for this I have never put more positive thinking into an outcome that I am confident I will end up on therapy.

Every time I see it’s 11:11 I make a wish that I end up with the drug and it works.

Tonight a friend asked me if I was scared, I told him I don’t really have an option to be scared at this point. It’s either live in pain that is inching on a 10/10 or give this a shot.

I’m out of options. The pros outweigh the cons.

So, I will as Ovid says, “be patient and tough; someday this pain will be useful to you.”

Sunday nights how I loathe you.

On Sunday nights I not only dread the week ahead, packing my bag for the gym, but most of all I hate the little bottle of poison that stares me in the face.

Every Sunday night I take my weekly dose of Methotrexate.

Methotrexate interferes with the growth of certain cells of the body, especially cells that reproduce quickly, such as cancer cells, bone marrow cells and skin cells. It helps slow down or stop the grown of cells. In my case it helps slow my immune system from attacking my joints.

Methotrexate is chemotherapy; It’s my own personal little bottle of poison. And it sure does like to remind me of that later in the week. Most mornings I wake up nauseated. You can usually find me with a can of ginger ale  and saltines on my desk.

The warning label can be a little intimidating, “May cause very serious side effects. Some side effects of methotrexate may cause death. You should only take methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications.”

But sometimes you don’t have a choice. Either be stuck in bed or live my life…

I choose the latter.

In preparation for the clinical trial I have to stop a few therapies I’ve been on for the past few years. I need at least 4 weeks for my body to be clear of any current arthritis med I’m on. The only thing I can stay on is the chemotherapy.

My first week of preparation for the trial is over. I actually came out feeling way better than I had expected. Minus the nausea my joints were feeling okay this week. I think part of it has to be because I finally accepted my decision to participate in the trial.

I came home last Sunday from Portland to a card in the mail from a friend. The card not only from the thoughtful inspiring words inside from my friend, but the quote on the front of the card had a huge impact on me and changed my perspective. It opened my eyes to this path I’ve chosen. It read, “Most obstacles melt away when we make up our minds to walk boldly through them” – Orison Swett Marden

I’ve made a decision and now I need to embrace it. I need to own it.

Although I may loathe Sunday’s, I embrace Sunday’s. Sunday’s put my journey into perspective. It may be hard, but I’m going on this journey fighting!

I think one of the most important things in life is to find at least one person who sees exactly who you are.

Besides my family I have a few people in my life who know me. These people have seen me laugh, seen me smile and seen me cry. These people have not only seen me in these moments but they’ve truly seen who I am in these moments.

With everything that I’ve been through over the past decade I’ve changed. I am not the same person I was ten years ago. Some days I miss parts of the old me. There are times where I catch myself with these people and I realize I’m back. I treasure those moments.

Life hardens you in a way. You can try to stop it, but once it has started it’s hard to go back.

It’s nice to know you there are still people that can bring out the best in you. That can see you for you and bring that part of you that has been hidden for so long.

This week has been filled with a few of these people bringing out that part of me and reminding me I’m still here. I don’t know where I’d be without them. But they made this week a little easier knowing that no matter what they will always be there for me.

Today was the first day I started to feel the effects of the meds coming out of my system.

The journey begins today.

I announced on facebook a few weeks back that I had made a big decision in my life.  Now that I’m diving headfirst into this process I think it is time I fill everyone in on my big news.

I have decided to enroll in a clinical trial for my psoriatic arthritis. I’ve come down to only having two options left before all I can do is sit around and wait for a treatment to come along. I want to try something though I won’t give up on my health or my future.

The trial is for a new therapy, it is a randomized, double-blind, placebo-controlled study. Which means there is a chance I end up with the placebo. To become eligible for the trial I have to ween off of a number of the drugs i’m currently on and go 4 weeks without any arthritis medication.

Let’s just say it’s going to be a long and painful next few weeks. I’m preparing myself for the worst and unfortunately already see the worst happening to my body. I can’t stop it, I have to let it happen.

I’m going to need strength and courage to get through these next 6-8 months. As this will be one of the hardest things I’ve ever done in my life. I’ve been through a lot and I feel like I know what I can think to expect during this journey, but you never really know until its happening.

I’m going to try to keep everyone informed on how I’m doing and what is going on here as I begin this process.

Feel free to ask questions along the way.

love can be so many different things. But at it’s core, when everything else is stripped away, love is the most complicated and beautiful thing there is.

It drive us to do ridiculous things. It forces our hand in making decisions we never knew possible. It inspires us. It scares us. It confuses us. It ignites us.

Love doesn’t always make sense. Love’s timing isn’t going to be perfect. There might be what seems like impossible time or space between you and what you love.

But when you discover it, you must be willing to drop everything and do anything to pursue it. To embrace it. To be overwhelmed by it.

Have you seen this song that’s been floating around from Goyte, “Somebody that I used to know” ? It’s pretty amazing. Check it out… and keep watching….

But the best part is, everyone keeps covering the song, and each version is just as good as the last.
The first version I heard was from Walk Off The Earth

Then I heard Pentatonix from the show The Sing off Cover it, and that is a pretty amazing experience because the entire song is all vocals there are no instruments.

and then… Ingrid Michaelson had to go and do it! Amaze balls

Pretty amazing you can have 4 completely different versions of the same song and they are all so amazing yet so different. They just keep getting better!

If I could say anything what would it be?
I would tell you that I love you, but by now I hope that you already know.

if you could go anywhere, anywhere what would you see?
take a step in any direction, it’s make believe
if your mind is always moving its hard to get your heart up off the ground

we won’t break if we let go
you and i already know
we were bound to be set free
even surely, here we are now
you can say anything

Tristan Prettyman. <3

What do you regret?

Really. Take a minute and think about it. If there was one thing, five things, ten things you could take back, what would it be?

Wish you would have spent more time with someone? Wish you would have gone back to school?

Maybe you wouldn’t have drank so much? Let loose more in college?

Spending more time with your friends?

Told someone you loved them?

Maybe you should have listened more? Applied for your dream job?

Traveled more?

Volunteered more? Ate better? Worked out more? Saved more money?

Re-connecting with someone from your past?

Asked someone to marry you?

Told someone your sorry?

Think about it, if I came up to you in the street today and asked you, “What in your lifetime do you regret?”

how would you answer?

But then again, do you really regret anything? Because at one moment it may have been exactly what you wanted?

But things change.

What do you regret?