Who I Am

When the song, You Say by Lauren Daigle, first came out on the radio and I heard it for the first time, I cried. It was as if she wrote this just for me. It was as if she went into my past, saw all of my struggles with myself, saw all of the areas where I felt I fell short, all of the relationships I desperately wanted (and often times still do), all of the insecurities I've had, all of the times I felt I wasn't good enough (and still do), and on and on and on, and wrote this for me.

 You Say

I keep fighting voices in my mind that say I’m not enough
Every single lie that tells me I will never measure up
Am I more than just the sum of every high and every low?
Remind me once again just who I am, because I need to know (ooh oh)

You say I am loved when I can’t feel a thing
You say I am strong when I think I am weak
You say I am held when I am falling short
When I don’t belong, oh You say that I am Yours
And I believe (I), oh I believe (I)
What You say of me (I)
I believe

The only thing that matters now is everything You think of me
In You I find my worth, in You I find my identity, (ooh oh)

You say I am loved when I can’t feel a thing
You say I am strong when I think I am weak
And You say I am held when I am falling short
When I don’t belong, oh You say that I am Yours
And I believe (I), oh I believe (I)
What You say of me (I)
Oh, I believe

Taking all I have and now I'm laying it at Your feet
You have every failure God, and You'll have every victory, (ooh oh)

You say I am loved when I can’t feel a thing
You say I am strong when I think I am weak
You say I am held when I am falling short
When I don’t belong, oh You say that I am Yours
And I believe (I), oh I believe (I)
What You say of me (I)
I believe

Oh I believe (I), yes I believe (I)
What You say of me (I)
Oh I believe (oh)

Songwriters: Paul Mabury / Lauren Ashley Daigle / Jason Ingram

You Say lyrics © Sony/ATV Music Publishing LLC

 These are the lyrics to her song. Right from the very beginning, about fighting the voices in my mind, not being good enough, never being able to measure up. Oh My Goodness!! That is how I have felt...forever! Now, before you say "but look at what you do, what you have done, what you have accomplished", because I have been blessed many times over, you have to understand the struggle to get here.

I have always struggled with my self-worth my entire life. Wondering where I belonged. Feeling that I didn't fit in with people or groups that I wanted to belong to. Desperate for relationships that weren't just one-sided. Feeling that I wasn't good enough to be part of a group, to be chosen for something I really wanted (or thought I did), or just to be accepted.

I've always been pretty shy. I know some who read this will find that comical, but I really am. From a very young age I struggled with talking with people who I didn't know. I found it difficult to make friends at first because of this shyness. Having relationships with friends (once I got to know them) wasn't difficult, but it was often difficult getting to that point. Not that I was difficult to speak to, just that I was wary of opening myself up to someone lest I get hurt. I have always had really close friends. Not tons of friends, but the ones I have are truly special.

When I think back to high school (and why would I want to do that?), it kind of makes my stomach churn. I can remember desperately wanting to be part of a "group". I don't know what group, maybe the popular kids, definitely not the smokers (although I think I'm probably friends with some of those smokers)! I never considered myself one of the popular kids from my school. I knew LOTS of kids from all groups and could get along with and be friends with EVERYONE. I wasn't cute enough, didn't wear the right clothes, didn't have the right body type, maybe my dad didn't work for the right company, I wasn't athletic. So many variables to consider. But...I had friends, good friends.

In addition to being shy, I have always gotten extremely nervous when speaking or performing in front of a group of people. Knowing that you would think that I would never want to perform in front of anyone. On the contrary, I have loved to sing from an early age. That didn't mean I didn't get nervous, because I did! I think I was pretty good at singing (I was also in the band, played clarinet, and was our drum major my senior year). I loved singing so much I decided to major in vocal music performance in college.  My absolute dream was to sing at the Metropolitan Opera in NYC. I don't know if I would have ever made it because I let those voices discourage me from finding out.

Years later, I began to sing regularly at church. Still getting nervous, but doing it none the less. My voice was a gift I was given by God and I had to use it no matter how nervous I got. Still...those voices...not good enough...never measure up...always someone better. I wasn't singing for glory, just God, but at the same time I wanted to do well. I think part of my nervousness over the years was that I didn't want to be laughed at, to disappoint anyone, to please everyone when really I just needed to sing for God. Thinking about it right now makes me well-up with tears. All the years I worried about what others thought, when really no one else but God mattered!

Pleasing others, wanting to be accepted by everyone, feeling left out when not included, these are all areas I have struggled with too. This is not just with people I know or friends, but even family. Relationships are so important to me and it's often here that I hear the voices saying I'm not good enough...someone else is more important...it's okay if you aren't included...you get the idea. I've always tried to include everyone, not leave anyone out because I know how that feels to be left out and not included. It hurts...again the voices telling me I'm not good enough...will never measure up.

And then this song...it's not as if I haven't heard these words spoken or sung before, but there's just something in this song that struck a chord. So many things in my past (and actually in my present too) that have eaten away at me, that have caused me time, energy, tears, are not important! It doesn't matter what others think of me (although I still dwell on this because I want to be liked and accepted). It only matters that God loves me and accepts me just as I am. With all my failures, my weaknesses, my struggles. I know it is a daily battle to fight back those voices that tell me I'm not enough, that try and tell me that I'll never measure up to standards of today (whatever those may be). But this I know...it isn't about me, but about Him. I know this side of heaven I'll never be enough, never good enough, pretty enough, you name it. But to my God, I'm just right! If I fall, I know He'll be there to pick me up and if I have a victory of some kind it really won't be mine but His!

These will all be daily struggles, but...

I know I'm loved.
I know I'm strong.
I know He holds me.
I know I belong.
I know I'm HIS!
And I believe...

Update:  I wrote and published all the above in 2018. I started to write a new post today, 2/20/23 about being weary. Weary for all of the reasons listed above but then I re-read this and realized I've already written it. I think at times we all get weary and burdened in our lives, from things we've done or maybe things we should have done. Regardless, there is always REST with the Father. For all He does for me, I'm so very thankful.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30

My RA Journey - Revisted

I have Rheumatoid Arthritis. I've been diagnosed with it since 2005, right about the time I turned 45. However, looking back there were a few signs of it occasionally rearing it's ugly head back to about 1998.

There aren't any physical attributes with RA, at least not on me. Many of you have probably seen others who have RA who have the huge, gnarled knuckles, crooked fingers, maybe they walk with a cane or walker (if they are able to walk at all). For some, it affects not only their joints, but also their internal organs. So far, it hasn't affected mine (let's hope and pray it never does).

I had a teacher in high school, Kathy Bertrand, who had RA from the time she was in high school. I can't imagine living such a young life with this horrible disease. At the time she was diagnosed, there weren't medications as there are now. I know she had many surgeries to try and straighten her fingers just so that she could function and her feet just so that she could walk. In the end, the disease took her life.

My disease isn't that bad. Actually, most of the time I feel just fine. Also, I don't have any physical deformities due to this disease. You can't "see" that I have RA and if I didn't tell you, you wouldn't know. But believe me, it's there.

I started getting a biologic medication through an IV drip in 2008. This was after trying a number of different medications that either didn't work or was so strong that it nearly killed my liver.

I started getting Remicade back in 2008. At that time, it was given every 8 weeks and was a 2-hour process. I had a difficult time with this medication for quite a while. I would get side effects from it including flu-like symptoms, headache, chills, and body aches for probably about a year. I even had a head ache so bad that I lost the hearing in my left ear for a day. In addition, after a while, I developed an allergic reaction WHILE it was being administered in the form of hives. They even had to stop the infusion at one point because my throat was beginning to close up. So this began my journey of pre-medicating with Benadryl (2), Claritin (2), Tylenol (2), and a steroid injection BEFORE getting the infusion.

After a while, the 8 weeks was too long so it was changed to every 7 weeks. Then, every 6 weeks. Then, my dosage was increased. Again, time between infusions was reduced to every 5 weeks and finally every 4 weeks. By this time I was getting about 2 good weeks virtually pain free. 2 weeks. Also "virtually" pain free, not completely, but mostly.

So now my doctor has decided to change my medication from Remicade to Orencia. It is also administered through an IV drip but only takes 30 minutes rather than 2 hours. I don't know if I will have any side effects during the infusion nor do I know if I will have any side effects after it. I don't know how long it might take to get any relief but I have to try it.

If you really know me, you know I don't usually complain about this disease too much. I still live an active life, I workout just about every day (even when I hurt), I play with my granddaughters (and want to continue to be able to play with all of them for many years to come), I love to work on projects, I love to build things, I love to do things with and for my kids, and I love to travel with my husband.

I don't know if there will be a cure for RA in my lifetime or ever, but I hope there will be a medication I can continue to get that will allow me to live a long and full life. I have too many things I would like to be able to do for a long long time. Also, remember that not everyone who has a disability has a physically apparent defect. There are many of us who are in pain, struggle to walk, pick things up, etc., but we don't physically look like we have anything wrong with us.

Revision
Since I composed and posted the above, little has changed for me in a positive physical direction. As a matter of fact, even with new medication, my RA has gotten worse. As each month has gone by since June, I've hoped there would be improvement in how I felt. That the medication would begin to work on those joints that were causing me problems. Instead, more and more joints have become painful and life has become more difficult with each painful day.

Simple everyday tasks that we usually take for granted have become nearly impossible. I say nearly because even though they are painful I still have to do them. Taking a shower or bath, fixing my hair, putting on and taking off clothes, writing anything with a pen/pencil, even driving. There are many others, but you get the idea. These are the simple things. There are many other things that I used to do before the pain RA took over that I enjoyed doing: exercising, crafting, working on projects around the house. Now, I do what I need to do at work and home, read more, and watch TV maybe a little too much. Even picking up and loving on my granddaughters has become painful but I'm not going to stop doing that!!

I have my moments (and sometimes hours) when I let the pity party begin. There are things I want to do that I can't and it makes me angry. Things I should be able to do that are just too painful right now.

I was supposed to see my doctor and get an infusion on Thursday, but the weather prevented me from getting into St. Louis. I was, however, able to get in on Friday and even though he was busy, he managed to fit me in. He and I (and my lab work) determined that I have had constant inflammation since changing medication in June. The current one isn't working at all. So, approval is being sought from my insurance to change yet again. It is a newer form of the previous medication I was on that worked for quite a long time. I'm hopeful that it will work and work soon. I'm also hopeful that I can possibly begin it next week. In the mean time, I just function the best I can each day.

Through all of this, I have never once lost sight of the power and presence of my God. Over the years I have prayed many things to him concerning my RA, the biggest one was to take it from me if it was His will. Well, as you can tell, it hasn't been His will. But, I know he is with me. I am reminded of this each and every day through His word. I also listen to Christian radio (Joy-FM). This morning has been especially difficult and these songs came on, almost one after the other. If you haven't heard them before, look them up. They are songs on encouragement, at least they have been for me.

Even If - Mercy Me
Joy - For King & Country
Good Good Father - Zealand Worship
All My Hope - Crowder
Counting Every Blessing - Rend Collective
Who You Say I Am - Hillsong Worship

Having this disease has certainly opened my eyes to the daily struggles of others who have unseen/unknown physical ailments. How many people that you know have autoimmune diseases who never tell you about them? Many didn't know that I did until I published this in June.

Someone I haven't mentioned before who has been my constant, my strength, my everything, has been my husband, Jeff. I thank God for him every single day.

So, I pray that this new medication will begin working as soon as I'm able to get it. If not, we'll keep looking for one that will. And pray for all of those who are in constant pain. While mine is constant now, it hasn't always been and hopefully won't be soon. But there are those who are in much more pain than I am. I'm not usually a complainer about this. It's just there. Pray for those who really need relief.

"Happy"

As adults, we all know the things that make us happy. For me, happiness can be something as simple as seeing the sunshine in the morning, flowers blooming in the spring, newly fallen snow that sticks to the trees, and even a full gas tank when Jeff has taken my car and filled it up for me.

Happiness is also found in spending time with my family, whether individually or altogether. Each one of them brings such joy and happiness to my life every day.

As adults, we are aware of those things that bring us happiness as well as things, situations, or people who make us sad, scared, nervous, and anxious. We are able to steer clear of the negatives and move towards the positives.

At what age did we become aware of emotions and understand what they meant? I don't remember when I was first happy or sad, or upset, or any other emotion, but I know I have experienced all of them. I also don't remember the first time my sons were really happy, sad, or upset as young children, but I know they have been.

Babies show all types of emotions to let us know how they feel or what they need because they haven't learned how to communicate verbally. They smile, laugh, coo, fuss, and cry. They know what they feel so they express that the only way their know how.  But when do they REALLY know what any of these emotions are.

My granddaughter, Paisley, who is almost 2, is getting to the age of being able to express her feelings and emotions in words and not just in actions. She tells me "wuv oo, Mamaw", "tank oo, Mamaw", she gets angry when she doesn't get her way, and she cries when she gets her feelings hurt.

I got to spend the day with her just yesterday. It was a rainy, stormy day so we weren't able to go out and play as I had planned. We spent most of the morning playing with her toys in the house, "riding" her tricycle around the house, playing puzzles, and coloring.

After lunch and after her nap she really wanted to go out. Knowing we couldn't go play in the yard or go for a walk, I decided we would go into the garage and just open the garage door. We would go outside but not fully outside. I put her jacket on her, for some reason she wanted her mittens too, she picked up her Elmo, and out we went.

She was content to sit on the concrete floor for a while just watching the rain sprinkling down, but eventually started venturing out of the garage. It did stop raining eventually and we ventured over to the rocks that are in the front of the house where she loves to play and count. Unfortunately it started to sprinkle again so we had to go back to the garage for a while.

As we were in the garage, I was sitting on the floor and she was standing beside me, she suddenly wrapped her arms around herself as if to hug herself, she looked at me, and in the sweetest voice she said, "Happy, Mamaw!".   I don't know if she was happy to be outside, happy to be with me, or both. I like to think that it was both but even if she was only indicating her happiness with being outside, I thought that was the sweetest reaction. She isn't yet 2, but she knows what happiness is and what it feels like.

I think we can learn so much from children. How to be "happy" with the simple things. How to be content with just sitting in the garage watching the rain even though we can't play outside. Being content with just being with someone we love.

I didn't respond to her when she said that to me, but my response now is to remember her contentment, wrap my arms around her (and all my other loved ones), and say "Happy, Paisley!"