Heal Over

So its been awhile since I have written. Sorry about that. Life has been crazy. So I will rewind a bit for a little update. Due to a major increase in lower back pain, in late August I went through another back procedure. I had steroid injections put in both of my sacroiliac joints. The procedure was done under deep sedation by my pain management doctor Dr. Khan. When I woke up from the procedure my legs were tingly and my right foot was completely numb. The tingling and numbness lasted till the next day. So it was quite an adventure trying to get around the house. The pain in my back after the procedure was pretty bad and lasted almost 2 weeks. Which was a major inconvenience since I started my fall semester classes just 4 days after the procedure. But I got through it and the procedure has given me relief from the terrible back and hip pain cause by sacroiliitis.

Fast forward to present day. The methotrexate has started to kick in finally. I have noticed a slight decrease in the amount of weekly flares and morning stiffness. The MTX still makes me pretty tired and weak for a few days afterwards. But I will take sleepiness and weakness over pain any day. I will be going back to see my rheumatologist Dr. Johnson after my finals are over this week.

It is hard to believe that the fall semester of my senior year of nursing school at UTMB is already coming to a close. I have finals for my OB and Community Health classes this week. And after that I only have one online class for the remainder of the semester. So I am excited that I will get to enjoy the beautiful weather and the holidays this year without the interruption of school.

Today's song is Heal Over by KT Tunstall. Heal Over is a simple song that is a daily reminder that healing takes time. Sometimes when we have physical pain or emotional hurt, we expect that it should heal quickly on our time. But healing is never mindful of our expectations. It is a physiological fact that our bodies need time to repair what's been broken, hurt, or damaged. And sometimes when the healing process is complete, we are left with a scar that tells the story of our pain or we are left with a limp as a daily reminder of how we overcome. It is our scars that make us who we are because they are a scrapbook of permanent memories of the things we have endured. I am learning that healing takes time each and every day of my life. I have scars and I have joint pain that reminds me of my strength and endurance. In due time things will get better. Not on our time.....But some day we will all heal over.

"It isn't very difficult to see why
You are the way you are
Doesn't take a genius to realise
That sometimes life is hard
It's gonna take time
But you'll just have to wait
You're gonna be fine
But in the meantime

Come over here baby
Let me wipe your tears away
Come a little nearer baby
Cuz you'll heal over
Heal over
Heal over someday

And I don't wanna hear you tell yourself
That these feelings are in the past
You know it doesn't mean they're off the shelf
Because pain's built to last
Everybody sails alone
But we can travel side by side
Even if you fail
You know that no one really minds
Come over here baby

Don't hold on but don't let go
I know it's so hard
You've got to try to trust yourself
I know it's so hard, so hard

Come over here baby
Let me wipe your tears away
Come a little nearer baby
Cuz you'll heal over, heal over, heal over someday"

Pass Me Over

Well I've been on the Methotrexate chemo treatments for one month now. And still no improvement. So far the side effects of the treatments haven't been bad. I have gotten a few ulcers in my mouth and usually feel fatigued afterwards. I am doing the chemo every Friday evening. So I move a little slower throughout the weekend and into Mondays. No noticeable hair loss which is good. My biggest complaint is the lack of a positive result. Still no relief. I can't believe that it's been a year since I started on this quest to find a suitable treatment to help me battle the RA. It has been a year of pain and restlessness; false hope followed by failure, sleepless nights and frustration; fear and fight. It's been a year of lots of needle sticks, IV starts, x-rays, MRIs, and medications. Not to mention all of this while in nursing school. I look back and wonder sometimes how in the world am I still standing? How? Only God himself can answer that because if I had to do it on my own, I wouldn't have made it more than a few miles pass the starting line.

Today's song is Pass Me Over by Anthony Hamilton. Lately sleep has been a challenge. And without the help of medication it is nearly impossible. Instead of a place where I can lay down and rest my tired bones, my bed has been more like a nightmare. I toss and turn praying that any minute now I will fall asleep to end another day and dream of a place without the worries that surround me. This song by Anthony Hamilton helps me make it through rough nights like tonight. Some nights I find myself praying the lyrics of this song in hopes that all the bad things, all the pain, worry and frustration would some how pass me over for a change. For once just leave me be! Leave me be so I can sleep and dream. Leave me be so I can finally feel something besides pain. Leave me be to feel the resting presence of a gentle God again. So all pain and worry, please pass me over. Pass me over till my Saviour comes.

"Another day

Chance to make another chance

A fragile place, running on empty

A smile so faint, barely even breaks the space

World’s on shoulders now

Don’t be afraid

He who knows will make a way

His word alone is what has kept me

Born the Son, King of eternal peace

Lay your burdens down

If you catch me dreaming

Please don’t wake me till I'm done

Just leave me sleeping until the morning comes

Just pass me over

Make believe that I'm not there

Just leave me be

Until the Savior comes

Another night

Makes a way to the morn

Sleep in peace, joy come early

A covered child, steps away victorious

Salvation holds joy for all of us

If you catch me dreaming

Please don’t wake me till I'm done

Just leave me sleeping until the morning comes

Just pass me over

Make believe that I'm not there

Just leave me be

Until the Savior comes

Pass me over

Pass me over

Pass me over, till the Savior comes"

Take Me Away

Today I had a follow up visit with the doc. As I suspected, the Plaquenil did not work and for now I have stopped taking it. My joints are constantly hurting, swollen, and flaring. Recently I have been struggling with the increasing pain in my hands, arms, and right hip. And of course the bulging disks in my back don't make my situation any easier. Due to the lack of medications and treatments left for me to try Dr. Johnson has put me back on Methotrexate a chemo therapy drug. I took this drug for 3 and a half years after I was first diagnosed. So the plan is to revisit this treatment for awhile, steadily increase doses as needed, and hold my breath and say a prayer that it will begin to work. The MTX is a subcutaneous injection that I will give myself once a week. I have not taken this drug as an adult nor have I taken the amount prescribed before; so the side effects will be a mystery until they appear. I will have to get routine liver function test because it is a chemo therapy drug and is hepatoxic and can damage my liver. I will also have to take a folic acid supplement because MTX causes folic acid deficiency anemia. So I have to swallow a couple of extra pills each day. I already take so many pills, at this point what's a few more!

Today's song is Take Me Away by John Legend. John Legend is one of my favorite artist. I love his style of music and the way he incorporates the piano into modern day R&B. Take Me Away is a song about a girl who is seemingly unhappy with the current situations in her life. She asks a newly acquainted man to take her away so that she may vacate her life and leave her troubles behind. Man do I wish I could do the exact same thing right now. I told my Mom last night that I just wanted to have a "normal" body for a little bit to escape the pain, fatigue, and medications. I wish I could leave the RA behind and not have to think about it for a while. In my dreams I imagine dancing the tango under the stars in Argentina, exploring the streets of Barcelona Spain, floating down the streets of Venice Italy, and enjoying a late afternoon picnic and a glass of wine near the Eiffel Tower in Paris. If I could escape that's where I would go. Imagining these things is far more appealing than focusing on my RA. Maybe one day I'll actually make it to Argentina, Spain, Italy, and France. Then all I would need is a man to come and whisk me away! But for now, a girl has got to dream :)

"We danced and sang somewhere in between heaven and hell,

Gabrielle, that was her name.

Everyone was smiling even through their tears under a spell

But in Gabrielle's eyes nothing.

I asked, 'Do you not like the music?'

She said, 'it's alright.'

But she dances to her own sad tune. She says..

'Take me away from here

Take me somewhere, where love is like breathing

I don't care where we go

As long as I'm there with you baby.'

I could tell she's been through pain I could only dream

Nightmares that live where you live

Tears well in her eyes, but she wouldn't let them fall.

I'd give the world to know where her smile is.

I asked, 'Will you dance with me now.

Let me try to figure out the fastest route out of town?' She says...

'Take me away from here.

Take me somewhere, where love is like breathing.

I don't care where we go

As long as I'm there with you baby.'

'I got a full tank of gas girl.

Any where you want to go girl.

All you have to do is ask girl.'

And she says...

'Take me away from here.

Take me somewhere, where love is like breathing.

I don't care where we go

As long as I'm there with you baby."

With Imagination

I made it through my first year of nursing school !!! And I am officially a SENIOR in college. I have waited for the day that I could say that. And I will be awaiting the day of graduation. 2 more semesters and a few licensing exams and I will be a RN-BSN. Tomorrow I start summer school with Pediatrics and I will be doing my clinical rotation at Texas Children's Hospital and I am very excited. This class is going to be a 5 week whirlwind but I think I can do it.

In lieu of starting my senior year of college today's song is With Imagination by Harry Connick Jr. This song is going to be my theme song for the next 2 semesters. I've been through a lot, more than you could ever know. But I have set a goal and have my future to look forward to. And with imagination and hard work, I will get there. Some days I don't know how I continue on but I always manage to find the strength to fight another day. My favorite words of this song are, " I started with a dream but came to a decision. I started with a dream but now I have a mission. I have a goal to see beyond my vision and with imagination I'll get there." I want to reach my career goal and become a nurse. And I want to see beyond what even I believe is possible for me and my future. So here is a song to encourage all my fellow UTMB nursing students. Hang in there we will make it !!

"I've traveled many a mile and haven't found a home.

I've traveled many a mile and one seed's unsoiled.

I'll travel another mile 'till I find my own.

With imagination, I'll get there.

I started with a dream but came to a decision.

I started with a dream but now I have a mission.

I have a goal to see beyond my vision.

With imagination, I'll get there.

I've got to be strong to climb the next hill.

I've got to be strong, my fate to fulfill.

And from a strength, stronger than my will

With imagination, I'll get there.

In my Father's house, no harsh words are spoken

In my Father's house, no vows are broken.

In a holy place, my soul like beams open

With imagination, I'll get there.

When weary is your world, go and spin another.

When weary is your world, there's Heaven to discover.

Here on Earth, we're sister and brother.

With imagination, I'll get there.

And if I stand alone, then to my cause I'm loyal.

If I stand alone, either common or royal,

I'm not afraid to cross the sea of toil.

With imagination, I'll get there."

Mystery

Sorry it's been a while since I have written. Life seems to be moving at a faster pace than I can keep up with these days. Since I last wrote, the Cimzia treat has failed. My body and the Rheumatoid Arthritis never responded to the treatment. And again I am devastated and desperate to find a treatment that will work and relieve the pain. My doc has now started me on yet another treatment called Plaquenil. Plaquenil is an antimalarial drug which has shown some promise with the treatment of RA. It should take 6 weeks for this drug to show any effectiveness. So the waiting game continues. In the past month I have also been dealing with 2 bulging disk in my back due to the degeneration of some of vertebrae . I received 6 steroid injections into my back around the disk as well as an epidural injection of steroids into the disk in my thoracic spine. The steroid injections were very painful but I have finally felt some relief. I am having trouble sleeping which has spiraled into insomnia because of the pain in combination with all the stress from life and school. My doc also gave me another med to help me rest better. So there you go a short and sweet health update.

Now onto the good stuff ! Today's song is Mystery by Charlie Hall. After hearing the background and meaning of this song I immediately downloaded it off itunes. Charlie Hall wrote this song at a time when life as he knew it had fallen apart. Out of the devastation, anger, hurt, and brokenness came comfort in knowing the simple truths of Christ. Christ died, Christ is risen, and He will come again. At moments in our lives when we don't understand what went wrong or begin to question the meaning of our current troubles, we must hold onto these truth. And when we believe these truths to be true Christ becomes our sanity and our clarity. This song Mystery has become ingrained in my mind and heart. And at times when I don't quite understand why the way things are I will let Christ be my clarity. And He will take care of the rest. Sweet Jesus Christ my sanity and my clarity.

"Sweet Jesus Christ my sanity,

Sweet Jesus Christ my clarity.

Bread of Heaven broken for me

Cup of salvation held up to drink.

Jesus mystery.

Christ has died and Christ is risen.

Christ will come again.

Celebrate His death and rising

Lift your eyes and proclaim His coming.

Lift your eyes !

Christ has died and Christ is risen.

Christ will come again.

Sweet Jesus Christ my sanity."

Hands

I have just completed the 5th treatment of Cimzia. And well this is the final chance for it to start working. Dr. Johnson told me that unless this treatment starts to kick in and I see significant change that it too will be considered a failure. After I received the injections my legs bleed quit a bit more than usual. So much so that when Dr. Johnson walked into the room I had already raided the supply draw for gauze, towels, and alcohol wipes to stop the bleeding. Once we had gotten the bleeding under control, re-bandaged the injection sites, I washed all the blood off my hands and we began to discuss treatment options. I have exhausted almost every option. There are still a few biologic drugs that I can try and Dr. Johnson and I will sit down next month together and decide where we go from here. The Lyrica I've been taking for the fibromyalgia started severely breaking out my skin so we decided to switch it out with a new medicine called Cymbalta. It's an antidepressant but has been shown to help with the neuromuscular problems. But it doesn't come without its side effects like constant nausea. I already have a weak stomach so needless to say I was up most of the night feeling like my stomach was in my throat. Dr. Johnson said this should pass within a week as my body adjust to the medication. God I hope he's right. The Cimzia treatment has knocked me down this time. I am more tired and weak than usual. So this weekend I will rest as the waiting game continues.

I recently received the results from the MRIs taken of my spine. And the results aren't good. Since I was a young child I have had tremendous trouble with my back. And for the past 8 years or so I have a particular problem with one specific spot. And when I asked my mom or dad to rub my back they know exactly where it hurts. I have had countless x-rays of my spine that revealed no abnormalities. But with the MRI a problem was finally discovered. I have an impingement of my 7th thoracic vertebrae. In sort it means that my vertebrae is pushing against my spinal cord causing severe pain. The impingement can be caused by several things like a herniated disk, an injury or a number of different forms of arthritis that effect the spine. Most likely it is the later of these that has caused this problem. The impingement will have to be surgically corrected so I have an appointment with an orthopedic spine surgeon Dr. Ngu on Feb 11th. So I have added one more physician to my dream team. Dr. Ngu and Dr. Johnson will be working closely together to come up with the least invasive and most beneficial way to correct the impingement and minimize the pain. As many of you know after having a simple hand surgery the stress placed on my body due to the RA left me unable to walk for weeks without assistance. And 3 months of intense physical therapy was needed to regain the use of my hand. So as you can imagine I am terrified of the thought of having back surgery. I just know that the rehabilitation will probably be the fight of my life. But it seems like it may be my only option. We will know more after my appointment next week, of the extent of the impingement and what it will take to fix it. The arthritis has also started to effect the joints in my jaw. As a result I have had to change what and how I eat to accommodate this new discomfort. The pain also radiates giving me bad headaches. After eating dinner this past week I have had to ice my jaws to control the pain. So for now I will be eating a lot of yogurts, soups and sweet potatoes.

Today's song is Hands by Jewel. I like this song and it has a powerful message of inner strength and compassion for others. There is so much heart ache and worry in our world today and I feel that if we turned the words of this song into actions, that maybe we could change the circumstances that currently surround us. Although I find myself in an unimaginable circumstance that most will never fully understand or experience for themselves, I feel that my story can make a difference. You see when bad things happen to us we begin to immediately question the reasons behind it all and the whys fall easily from our tongue. And to this day I can't answer the why questions but I am convinced that it would be of no benefit to me to understand why. But I can tell you that while I am on this Earth, I won't be made useless or idle with despair. I will not pity myself and I refuse to give up hope and give in to complacency. I will do whatever I can, however I can to spread my story to whoever will listen. Not to glorify myself, but to become like the hand of God extended out towards those who are desperate for change. I will not suffer in vein. Instead I will get down on my knees and pray that my experiences will help someone else overcome theirs. Because in the end, only kindness matters. I only have one shot. And I only have these 2 hands. Rheumatoid Arthritis or not, I will never be broken.

"If I could tell the world just one thing,

It would be that we're all OK.

And not to worry cause worry is wasteful

And useless in times like these.

I won't be made useless.

I won't be idle with despair.

I will gather around my faith

For light does the darkness most fear.

My hands are small I know.

But they're not yours they are my own

But they're not yours they are my own

And I am never broken.

Poverty stole your golden shoes,

But it didn't steal your laughter.

And heartache came to visit me

But I knew it wasn't ever after.

We'll fight, not out of spite

For someone must stand for what is right.

Cause where there's a man who has no voice,

There ours shall go singing.

My hands are small I know.

But they're not yours they are my own

But they're not yours they are my own.

I am never broken.

In the end only kindness matters.

I will get down on my knees and I will pray.

I will get down on my knees and I will pray.

My hands are small I know.

But they're not yours they are my own

But they're not yours they are my own.

I am never broken.

We are God's eyes.

We are God's heart.

We are God's hands.

Her Diamonds

I have now completed 4 Cimzia treatments. The treatment went as usual....painful. I have yet to feel any relief or benefit from this new drug. Dr. Johnson said that it could take up to 90 days or 5 treatments before the medication starts to kick in. So for now, I wait. I usually pride myself on being a patient person but recently I have become impatient. Impatient with the treatments, impatient with the pain, myself, and impatient with God. I am exhausted and frustrated. I will be getting an MRI of my back soon. The pain in my back is ever-present and makes it impossible to function some days. Over the holiday break I went to physical therapy for my back. The therapist used heat, electrical stimulation, and massage to try to relieve some of the muscular pain. I was also taught a few exercises to strengthen my core and help stabilize my spine. Yet the exercises are painful on all my other joints. So its a game of sacrifice of which areas hurt the most and what pain is tolerable each day. Doctor Johnson is a wonderful doctor and truly cares about me. He listens to my concerns and speaks to me with honesty and hope. You don't find that often and I am so grateful for the him and his staff. As I left the office after my treatment the words "Just hang in there," were again spoken. I'm still hanging but now my fingers are starting to slip.

I ended my first semester of nursing school at UTMB. It was rough and stressful. But I made it through with 3 A's and 1 B. I also received a $1,500 scholarship for this spring semester. Considering all that I have been going through, I would have to say that is pretty darn good. And I am proud of myself. Today was my first day of the second semester. It's going to be really tough on me physically. And I am worried that if the treatments don't start to work I will not be able to keep up with the high demand of this nursing program. So for now I will take it a day at a time. That's the best I can do.

Today's song is Her Diamonds by Rob Thomas. I came across this song on the radio and immediately related to it. I always like to do a little background research on artist to find the meaning behind the lyrics. Rob Thomas wrote this song for his wife who suffers from an autoimmune disease just like mine. Her Diamonds tells the story of the pain and helplessness that someone feels when a loved one is plagued by an autoimmune disease. I have no doubt that in many cases it is harder to watch someone go through something terrible and not be able to help, then actually going through it yourself. I think about this every day and now more than ever. My disease doesn't just effect me; it effect those that love and care for me. Lately I feel guilty for having Rheumatoid Arthritis because I hate that my family worries. My physical pain has become my family's emotional pain and stress. Sometimes I wish I didn't have RA, not for my own convenience, but so that my family wouldn't have to feel helpless. I would give anything to take away the pain that this terrible disease has inadvertently cause them. The pain that I have caused them.

"'O what the hell,' she says, 'I just can't win for losing.' And then she lays back down.

There are so many times I don't know what I'm doing; Like I don't know now.

By the light of the moon she rubs her eyes,

she says, 'It's funny how the night can make you blind.'

And I can just imagine.

I don't know what I'm suppose to do, but if she feels bad then I do too.

So I let her be.

And she says, 'I can't take no more.'

Her tears like diamonds on the floor.

Her diamonds bring me down.

Cause I can't help her now.

She's down in it; she tried her best and now she can't win

Its hard to see them on the ground, her diamonds falling down.

She sits down and stares into the distance and takes all night.

I know I could break her concentration, but it don't feel right

By the light of the moon she rubs her eyes, sits down on the bed and starts to cry.

There's something less about her

I don't know what I am supposed to do so I sit down and I cry too

But don't let her see.

And she says, 'I can't take no more.'

Her tears like diamonds on the floor.

Her diamonds bring me down.

Cause I can't help her now.

She's down in it; she tried her best and now she can't win.

Its hard to see them on the ground, her diamonds falling down.

She shuts out the night and tries to close her eyes.

If she can find day light then she'll be alright.

Just not tonight.

And she says, 'I can't take no more.'

Her tears like diamonds on the floor.

Her diamonds bring me down.

Cause I can't help her now.

She's down in it; she tried her best and now she can't win.

Its hard to see them on the ground, her diamonds falling down."