Point to Him

I have been able to function this week because I finally got medicine for my pain. My sister asked if it makes me feel 100% and I told her the pain is always there, but it makes it bearable. That meant we were able to make it to church today. I'm so beyond grateful for a church family who never makes us feel bad if we aren't there and genuinely keeps up with us to make sure we don't need help. A couple weeks ago at a wedding, multiple women from our church and reached out to come watch the girls if I was in too much pain or just needed to go out and get groceries. I was beyond humbled. Today one of the men asked if I knew how much they all loved me. Oh, how the feeling is mutual. I don't know where I would be going through this experience without God, my faith, and community


I want to make sure when there is focus on how well I'm doing or answers, that I always point to Him and give Him praise for it all. It's not me. When I'm able to stay strong and continue to have hope especially during trying times, He gives me specific people to reach out and be there for me, time and time again. Like the nurse at my pain specialist appointment who asked if she could continue praying for me even after she was going off shift. While I was in waiting room to try a nerve block, she was a crying shoulder because I didn't know what else to do to get relief and I was so nervous. She had gone through the same thing with pain and having young children. She knew we were going to get answers. And guess what? As I was praying on that operating table before the doctor started, I could've never imagined what would happen next. The doctor saw something on that x ray, something that would give us some answers, something that validated my pain, something that got me some medicine to help function as we continue to figure all this out. Earlier I was even irritated and angry. I hadn't eaten or drank anything that morning for my appointment so when we decided on a nerve block, they said I could get anesthesia and I would have procedure as soon as they could get insurance approved and get my ready. While we were waiting, that same nurse brought me a cup of water. As I was rechecking in for the surgery center, the receptionist takes one look at me and my water and says, "you can't have anesthesia now." At the time I couldn't understand there was a reason for me not having it. If I was knocked out, I wouldn't have been able to talk to the operating doctor and give him feedback or see with my own eyes his very unusual find. Who knows if he also would've just tried anyway without deciding we needed more scans, talk to all the other doctors, or bring in my doctor I saw that morning who knew all my issues and pain.


I point to Him and share with you that all your prayers are working. That day was such a testimony.

Road Trip Playlist

Music is so therapeutic. On my drives to Dallas for appointments, I love to worship God and praise Him with songs. He definitely speaks to me through lyrics so I decided to share with you some of the ones that I can't stop listening to over and over again because they hit home.

 

Sometimes when there's no answer

Or no reason for the pain

And I just can't wrap my head around the wire of things that come my way

I still believe you hold a place for us in heaven

So even when my faith on earth is shaken

You're my safe haven

These aren't lyrics, but if you haven't seen the movie about this song, it's a must.

Before I bring my need
I will bring my heart
Before I lift my cares
I will lift my arms
I wanna know You
I wanna find You
In every season
In every moment
Before I bring my need
I will bring my heart
And seek You

 

I hear the whisper underneath Your breath

I hear you whisper, you have nothing left
I will send out an army to find You
In the middle of the darkest night
It's true, I will rescue you
I will never stop marching to reach you
In the middle of the hardest fight
It's true, I will rescue you

 

Ya this whole song.

What was dead now lives again
My heart's beating, beating inside my chest
Oh I'm coming alive with joy and destiny
'Cause You're restoring me piece by piece

 

Let your glory fall

Overwhelm my soul

Let your presence flood my life, oh Lord

 

It’s been another day when it seems like faith eludes me

Everything’s been so confusing

Fear got the best of me

Now I’m lying here worried about tomorrow

‘cause the weight of everything I don’t know

Is so heavy I can’t sleep

But the truth remains the same

Even when I don’t know what to pray

But what I know

Is You, my God are real

No matter how I feel

You’ve never let me go

And what I know

Is there will never be a day

You aren’t just a breath away

And through it all I’ve gotta hold

To what I know

 

Cause I got a couple dents in my fender

Got a couple rips in my jeans

Try to fit the pieces together

But perfection is my enemy

On my own I'm so clumsy

But on your shoulders I can see

I'm free to be me

 

Feels like I've been here forever

Why can't You just intervene?

Do You see the tears keep falling

And I'm falling apart at the seams

But You never said the road would be easy

But You said that You would never leave

And You never promised that this life wasn't hard

But You promised You'd take care of me

So I'll stop searching for the answers

I'll stop praying for an escape

And I'll trust You God with where I am

And believe You will have Your way

Just have Your way

Just have Your way

 

I believe that You are God alone

But sometimes I still try to take control

'Cause I get scared when I can't see the end

And all You want from me is to let go

You're parting waters

Making a way for me

You're moving mountains, that I don't even see

You've answered my prayer, before I even speak

It’s ready, set, go Its another wild day When the stress is on the rise In my heart I feel you say Just breathe, just breathe Come and rest At my feet And be, just be Chaos calls But all you really need Is to just breathe

 

And only you can see the good In broken things You took my heart of stone And you made it home And set this prisoner free

There is no higher no

There is no greater no

There is none stronger than our God

 

What you gonna do when the bottom falls out

And you're left with nothing but your fear and your doubt to hold to?

Who will hold you?

Where you gonna run when it's all on the line

And you're looking for someone to save your life?

To save your life

Love can hear you

Love can heal you

If you let it inside

Oh, remember now

Love's not easy

But it's worth it

 

When my world shakes

Your love remains unshaken

So constant, so perfect, unwavering

When my world falls

Your love remains unfailing

So constant, so perfect, unwavering

So constant, so perfect, unwavering

Any of these that's your favorite or a certain lyric speaking to you lately?

Health Update 6/13/2019

I know it's been a little while since I've really updated anyone. I'm still in the middle of a lot more waiting, but thought I would catch everyone up on what we've found out so far and what is to come in the next few months.


Since my diagnosis by the rheumatologist and dermatologist, I have seen an allergist and a neurologist. I am currently doing testing for MCAS (Mast Cell Activation Syndrome) with the allergist. With the neurologist, I did MRI scans of my brain and lumbar spine and thankfully those all came back clear so she was able to rule out MS.


I've had three appointments with my Physical Therapist who is amazing and has even worked with other EDS patients so she knows her stuff. I have learned a lot, believe she will really help me, but just being realistic, it's going to be a very long and slow process to reach our goals. Last Friday she was able to actually give me a little pain relief for the first time in the last couple months. When she works on me though, that night my pain will hurt even more than normal so it can be really tough. It's showing we are making progress though and can pinpoint exactly where my problem is. I still can't believe EDS is really what has been causing my issues, specifically my cramping and leg numbness.


Pain management and finding a pain specialist has been the biggest obstacle. I went back to my GP and was able to get a referral to a new pain specialist since the previous one has not been able to schedule an appointment with me for 4 months. It takes the doctor office weeks to get a referral to the pain specialist so I am waiting to get an appointment set up. I did get a referral to one in Dallas from my rheumatologist, but he is out of my insurance network so it will cost quite a bit for me to see him. Thankfully some good news today! I had a recommendation for a pain specialist from the Dallas EDS group and when I called not only can the see me without a referral, but they are getting me in on Monday because of a cancellation.


The next big appointment is my cardiologist appointment July 5th. I previously had a rheumatologist and allergist appointment scheduled for that day so when I had to reschedule, the next available appointment for my rheumatologist is in September. The next step with her is to get the genetic test done to rule out any of the other Ehlers Danlos Syndrome types, especially Vascular. For my cardiologist appointment I'm obviously getting my heart checked with the chest pain and palpitations that I have (more thorough than tests I've had in the past when we lived in SC), but also to confirm POTS (Postural orthostatic tachycardia syndrome).


I will make another update post after my cardiologist and pain specialist appointments.

1000 Reasons to Smile

"When life gives you a hundred reasons to cry, show life that you have 1000 reasons to smile."

From Dallas appointments, birthdays, stomach bug, rain flooding our yard and sewer backing up, and a wedding, it was a woozie. Last week was rough, but TODAY was a great day and it finally felt like summer. Swimming at my mom's and pina colada drinks from Mary's on the way home was perfect 👌 I told C what is the most difficult is going through my health stuff while life still goes on. It doesn't just stop or I can't press pause as much as I'd like to. Now that a lot of appointments are out of the way I can finally take a deep breath and look back at the highlights of the last couple months that I still enjoyed despite my chronic pain and exactly why the blog is now called chronic pain overcomer.

Riding around the farm with Memaw & Grandpaw. It really is the most peaceful thing to get out in nature & be around the animals, the girls love it.

Picking wildflowers 💜

Lots of fun playdates swimming, going to the playground. & to the movies.

My 1st women's church retreat & weekend away from the girls. They were so good for Daddy and had a great time too!

L started walking & just in time for her 1st Easter Egg Hunt 🐰🐣

One of the most precious things is W requesting to worship Jesus. Both of the girls will sing & dance to "Reckless Love" by Cory Asbury.

I made an Art Cart for the girls because W has really been into painting, coloring, & crafting.

L has developed a shoe interest. This cracked me up. I should be impressed she matched stripes though right? ;)

For Mother's Day we made gingerbread houses (mine and the girls 1st time) & C made me my favorite Copper Creek copycat steak salad.

Millie & Poppy came to visit for Memorial Day 🇺🇲🎉

W & L have been playing together so much more now and we've even been able to transition them into same room. It's been hilarious watching on the monitor because L doesn't like anything in her crib and W doesn't like a mess on the floor so they will alternate throwing everything back & forth until one gets tired & goes to sleep.

W let me curl her hair for 1st time for the wedding.

After making this list I realized we had a lot of firsts. It's hard to believe that it's June. Father's Day this weekend and C and I's first trip away together since we've become parents will be here before we know it.

He is Faithful

Back when I had a blog about our life traveling before this one, I had written the post below. I think it's very important to remind yourself how God answers prayers and provides. I decided to share this past post again and will make a new post of all the things we've added since then.

He is Faithful
August 02, 2016

We are dedicating W at our church Sunday. Something I hope we will be able to teach and share with W as she grows up is how much God has done in our lives and how He answers prayers. I had this little reminder when this song came on the radio:

I used to listen to this song on replay and pray when I was going through a difficult time and dealing with depression before I met C. God has given me a husband who is the most perfect one for me, wonderful memories and experiences made with him, world travels to broaden our perspectives, people put in our life at the very right time we needed it who have become lifelong friends, a home and job for C close to family, and now the most precious gift, our daughter W. He really has turned my life into something beautiful.

My friend got C and I an Ebenezer box for our wedding gift. "The idea is that every time a blessing occurs, a trial is overcome, a need is met, or a prayer is answered in your marriage that you will write it on one of the cards and every year on your anniversary you open the Ebenezer and remember how God has been your help." There are so many times when God has answered our prayers and helped us in our marriage and I never want to forget what He has done.

•     Getting to move to a house out of a hotel in Jamaica, Queens
•     Having places to stay with power and hot water during Hurricane Sandy
•     My mom and sister coming to visit at the perfect time so we could get gas and have a warm place to stay
•     Finding a church and getting involved with wonderful people when C had to work so much
•     Getting to go back to Texas on holidays to visit family
•     Most memorable NYE I always dreamed of
•     We were able to get an apartment in Dallas and then cut down the lease from 1 year to 3 months so we could move
•     C got to come home to Dallas for our 1st anniversary so I could love on him and help him relax from work
•     C got to leave stressful job
•     Made it safely to Charlotte and C had a job
•     A stress-free work environment for C, safe area to live, and paid for living expenses
•     C got to experience where I spent my summers and first year of college, which changed my perspective
•     Meeting the perfect friend when I needed it most
•     C's company paid to get us out of our lease to move to Austria just in time with sketchy neighbors
•     C worked in Europe so we could save enough to buy a house (and I got to go with)
•     Accepting lessons in our lives and blessings of experiences to make us learn patience
•     Looking at the positives, which in turn made us grateful when we got what we always wanted
•     C's company paid for us to live in a hotel so we could look for a place when we got back to Charlotte
•     Found a house
•     Got to settle in South Carolina (for a year)
•     Met new people
•     Got pregnant
•     C had a job interview here and then got it out of 40 candidates
•     Everything went smoothly with the move here
•     C loves his new job and company with his own office, no travel, and actual vacation he can take
•     Found another house to raise our W in and a 7 minute commute to C's job
•     Had an amazing labor experience with a healthy baby girl