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Posts Tagged ‘rsd/crps’

Guess What?

Guess what?
Your prayers are working.
God is working in me. on me. with me. through me.

He put this verse in front of me a couple of weeks ago:

“And then He told me, ‘My grace is enough; it’s all you need. My strength comes into its own in your weakness’. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size – abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”

These are Paul’s words from 2 Corinthians 12:9-10, from The Message. It was a wake up call. But even just a few weeks ago, I was still struggling with it all.

Taking my RSD not only as a gift, but with good cheer? I don’t know.

Seeing my depression and RSD and Avoidant Personality Disorder and anxiety and all my other weaknesses as strengths? I just felt so weak all over.

But the Lord kept whispering His words to me over and over….

In my Bible Study we’ve been going through the book called Not A Fan by Kyle Idleman. There’s a small section in which Kyle explain’s that using the name Lord is translated as Kurios, the word given to a master or slave owner.

He is my Lord, my master, and because I’m so in love with Him, I am His slave.

But what I’m trying to tell you is that for so long, oh so long, I have been a slave to these other things: my depression, RSD, AvPD, food, weight issues, friendships, the list could go on.

All I needed to do was hand them over to my Lord, and let Him take over.

His Grace REALLY is enough.

I now have this new sense of freedom! Oh, the love of Jesus is amazing!

(thank you, Cindy C.)

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Ok. So, it’s 4:30 in the morning.
I’ve been lying here for some time now, going over SO many things rambling around in my head. Are you one of those kind of people, too? I learned a long, long time ago that 1 or 2 TylenolPM’s would fix this problem, but there are just some nights, it doesn’t matter. I still wake up. Thinking. Ok…usually worrying, for me at least anyways.

But not tonight.
Tonight it’s just about thinking.
Thinking about you and how I haven’t “talked” to you guys in so long.  I think the last time we “talked” was in November, maybe? And I was just not in a good place.

I spent most of the month of December with my parents in Oklahoma.

I remember seeing my Momma for the first time at the airport…waiting for me. She was glowing 🙂

I remember seeing my Daddy for the first time outside the airport…waiting for me. I couldn’t hug him tight enough.

I remember seeing the Oklahoma sunset outside my parents’ country home that first evening, and finally feeling a small glimpse of God’s warmth again.

I remember spending a whole day with some very, very dear close friends of our’s from Hutchinson (I love you Chuck and Andrea and Claire and Annah!). Seeing my kids smile & Mike smile…it was a very good day.

I remember sitting with my Grandma Clark for a whole day and we just held hands and talked and cried.  I came to realize that day just how much I am like her.

But I also remember spending hours crying in my room, b/c I couldn’t handle all the commotion. I missed spending time with my sister and her husband and baby girls.  I didn’t get to spend very much time with my dearest Aunt Meme, b/c every time they came over, I was having some kind of breakdown.  I was on constant high alert that someone was going to accidently hit my foot.  I felt like my family didn’t know what to do with me anymore. And then there was the other elephant in the room…the fact that we live in Virginia. No one on my side of the family really understands this. I’m not going to lie. I really struggled with this, too.  Mike and I had some very deep heart-to-heart conversations while the rest of the house was merrily enjoying the Christmas activities and atmosphere.

So it’s after Christmas and time to come back here to Virginia.

And I spiraled into a kind of depression & sadness I didn’t know existed.

See, when we left Kansas and Oklahoma last May, I was determined to pull myself up by my boot straps and be a big girl about moving so far away. I was determined to not let it get to me. I had enough to worry about already with my chronic illness, CRPS/RSD,  and making sure my babies were adjusting ok, and supporting Mike in his new ministry.  I didn’t have time to be sad or grieve over leaving my only support system, and I wasn’t going to make time. It was just too much. I just knew for sure that my heart would literally fall out of my chest if I allowed myself to “go there”.

But then I went home. And I got to hold and hug and smell and feel and see my Momma and Daddy again. And I couldn’t hold it back any longer. Once we got home from the airport, we all three just hugged and cried. I didn’t realize how much I was really missing them.

So when I got back here to Virginia, it was like we had came here for the very first time. I was finally feeling sad about moving here, finally grieving.  But usually this brings a since of relief for people. Letting out their emotions so that they can move on. It wasn’t for me. My world was just getting darker and I couldn’t find the light of day.

With some encouragement, I decided to start some counseling, and I just can’t say enough good things about it. It’s very difficult emotionally, but I want to get better and I’m willing to do the work. I want to be able to go to church again.  I want to be able to just sit outside with my kids. I want to be able to go on a date with my husband. I want to be able to make a batch of cookies again.

And I will! But I can’t do it alone.

Will you pray for me as I start my new journey?

**To my FCC family, I want you to know that I’m not sad that we are here, at Fairmount. It has been just the mere distance away from parents that I’ve been dealing with.  We love you, and you guys have been so loving supportive towards us in the short amount of time that we’ve been here. Thank you for the cards and food and love that you’ve given to me 🙂

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Lost

Hello Friends.

I’m still here, kinda. The last few weeks have been some of the toughest days I’ve ever experienced in my life. On Sunday October 23rd Cader accidently hit the top of my RSD foot with a belt buckle. He was just trying to take it off my bed and the buckle flopped over…I talked about this last time. Well, just a few short 14 days later, Clarky accidently kicked my RSD toes, as in feeling like I stubbed it all over again. I instantly just started crying and saying, “Oh, no. Oh, no. Oh, no” over and over again. Of course, Clarky started crying, too and saying, “I’m sorry, Mommy!”. The last 11 days have just been terrible.

I’m so lost. This time around not only am I dealing with the horrific pain levels (I’ve put calls in to both of my drs about changing my meds…waiting on their decisions),

but the nasty arms of depression have wrapped itself around me.

This is my secret little demon I’ve dealt with since my pregnancy with Clarky. I’ve been on medication and it’s helped…a lot, but there are certain triggers or that time of the month that make it a little more difficult.

But then I got RSD, and it’s sent my depression into a whole new realm. The beginning of my diagnosis was a particularly difficult time, and you can read that in a few of my posts. It had several of you scared.

So here’s my disclaimer again: I would never and will never take my own life.

But by the very fact that I’m even saying something like this, let’s you know the seriousness of depression. Not only has the pain and depression left me feeling lost, I feel like I have lost so much.

Independence
Friends
Ability to make friends
My ministry
Cognitive skills
Can no longer bake or cook
The list could go on….

And to top it all off…I feel like a real hypocrite. I know deep in my heart that my previous posts are things that God wanted me to share with you, though.

Anyways…I just wanted to let you know why I haven’t said anything in while….not only is my foot/leg in a lot of pain, but my heart and mind are hurting, too. Please just keep praying for me. I do know that God is for me, but there are some days I don’t feel it…I just have to keep saying it to get through the day.

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Before I have you watch the video below I want you to know that I’ve been having a good week.  The spasms have gone away (just as the doc had predicted…I guess they’re right sometimes); and with the increase in the lyrica I’ve been trying to only use one crutch around the house and trying to not use a crutch at all just in my bedroom.  So, I’m having some better days 🙂  (I even got a lunch date with my hubby today!)

Halloween was this past week as you all know, and I had a blast handing out candy.  We finally live in a neighborhood were we have a lot of little trick-or-treaters.  I had a spot all fixed up for me in our chair by the door, so I was ready when the door bell rang.  Mike took care of our own trick-or-treaters again this year.  We had 2 football players (Cade & Reagan…lol) and a soccer player (Clark).

I was pretty sore and worn out the next day, but I find myself wanting to finally say yes to some things. For the last year and half, I’ve only wanted to say no…to everything.

I’ve been listening to Kari Jobe for quite a while.  I came across her music while were still at Crossroads.  We used to sing one of her songs called Revelation, and I just fell in love with the song.  Then I ended up buying her whole album.  Several of her songs really hit home with me before my diagnosis, when I was struggling with depression, then after my diagnosis of RSD/CRPS, and they are still healing me.

This is the one that He wanted me to share with you today:

So faithful
So constant
So loving and so true
So powerful in all You do

You fill me
You see me
You know my every move
You love for me to sing to You

I know that You are for me
I know that You are for me
I know that You will never
Forsake me in my weakness

And I know that You have come down
Even if to ride upon my heart
To remind me who You are

So patient
So gracious
So merciful and true
So wonderful in all You do

You fill me
You see me
You know my every move
And You love for me to sing to You

And Lord, I know that You are for me
I know that You are for me
I know that You will never
Forsake me in my weakness

And I know that You have come down
Even if to ride upon my heart
To remind me

I know that You are for me
I know that You are for me
I know that You will never
Forsake me in my weakness

And I know that You have come down
Even if to ride upon my heart
To remind me who You are

You remind me

I know that You are for me
I know that You are for me
I know that You will never
Forsake me in my weakness

And I know that You have come down
Even if to ride upon my heart
To remind me who You are

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Flares

Flare-ups.  It’s the dirty word in the world of chronic pain sufferers.

Crying.

Bone-crushing pain.

Swelling.

Burning.

Crying.

Gnashing of teeth.

Hell.

Yeah, I said a word that Christians aren’t supposed to use.  But I’m not just using this as a flippant curse word.  RSD/CRPS is listed at the very top of the pain scale for a reason:

It’s terrible, aching, burning, irritating pain. Everyday. But then something causes a flare-up and I’ve just got the wind knocked out of me, too.

And sometimes it’s the simplest of things that can cause a flare-up. For me, it’s the rain, mayonnaise, thunderstorms, fried foods, cold weather.  These are things that I can count on causing flare-ups.

But then there are unforeseen things.  Like last weekend, I had an energy drink and a few hours later, my leg and foot just felt like it was in some kind of burning torture device for the rest of the day/evening.  And then one of my children moved a belt on the bed and the metal buckle accidentally hit my foot. It sent my body into a pretty deep trauma mode this past week. My left hand and my RSD foot/leg began having spasms because of the trauma.

I had an appointment with my neurologist yesterday, but I’m still trying to sort out how I feel about it.  Basically, he upped my lyrica. I was pretty nervous about the spasms in my hand and foot/leg and he wrote it off as trauma b/c of the belt.  He doesn’t think the RSD is progressing. And he doesn’t think it’s b/c of the lyrica.  And he told me that the spasms were definitely not dystonia and didn’t look like myclonic jerks. I wanted to know the difference between what I was experiencing and dystonia and asked him.  He seemed to be a little upset that I asked.  Like I was questioning him.  I wasn’t.  I really did want to know. I’m freaked out about what my body is doing and he’s the doctor. Right?!?

Mike has been doing a ton of research on hyperbaric oxygen therapy (HBOT) the last few weeks. I’ve asked some of my online RSD friends about it and have heard positive things about it. So I asked my dr. about the HBOT and his response: “well, if you have the resources to pay for it…but….it’s more for blood vessel rehabilitation rather than your kind of RSD.”  In other words, he wasn’t really for it.

So, I’m left with this uneasy feeling about the whole appointment. I guess I should be glad that he said it wasn’t anything to be worried about. So, why I am sitting here still worrying about it? ….

“b/c you’re Shara and that’s what you do.”

Ok, Momma, Kris, Mike, and God…I hear you.

I’ll try to stop. I’ll give it a few more days. My dr did say to call him back if I’m still having the spasms in a week or two.  I want to listen to him. I just can’t shake off the feeling. Mike was with me, though, and he reads people really well and he seemed to think the appointment was fine.  I guess I’ve just been so keyed up from this last flare-up that I can’t think straight.  The more anxiety I have, the more pain I have, the more medicine I have to take for the anxiety and pain =  Shara doesn’t think straight.

Thank God for Mike.

I’m serious.  He’s my rock.  How many other husbands have to work with middle school kids, high school students, and then have to take care of three children under the age of ten and have to deal with the ups and downs of a seriously sick wife?  Mike is one of a kind.  And then there’s the week of a really bad flare-up like this last week, and I can’t even explain how strong he is for all of us.  He tried to stay home with me and go to work and be home again so that he could meet the kids at the bus after school and he made lunches every night and comforted me everyday and went to a meeting at school for Clarky’s speech and took me to my dr appointment, and then all the other church stuff this week that I don’t see.

This is why I want to get better.  He’s not only doing his part, but my part, too.  I want to be able to help my family again.  I want to be able to help Mike again. I don’t want flare-ups anymore.

I want to be better.

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Overdo Update

I guess it’s been a little while since I’ve updated…

Yeah…moving was rough.

Physically

Emotionally

Spiritually

I’m just now beginning to feel like my head is a little above the water. I had a scare in June that put me in the hospital. The docs said it was a crazy virus that made me severely sick and dehydrated and landed me in the hospital for a few days. I and my doc think it’s b/c my RSD has me weakened and so some bug that the kids or Mike brought home, I got it and well…I got it really, really bad. Just another reason I’m afraid to get out.

The kids had a great long summer. 🙂 They started school after Labor Day and have been doing great! They go to Pole Green Elementary. Cade is in 4th grade; Reagan is in 3rd grade; and Clark started Kindergarten this year. They are growing up so fast!!

So my beautiful kiddos have been doing great!

I started seeing a neurologist in September.  I think he’s a pretty good doc so far.  He started me on Lyrica and really think it’s starting to help a little.  I’m keeping my fingers crossed…but not too tight.

And then the spiritual…yeah.  Me and God. We’ve been wrestling a bit.

Having a chronic pain disease is not easy.

Being agoraphobic is not easy.

Moving across the country is not easy.

Being shy is not easy.

Having three children under the age of 10 is not easy.

Not being able to be a normal 34 year old woman is not easy.

So me and God have been wrestling. Wrestling with the why me’s. Wrestling with the why does my husband have to deal with this?  Wrestling with the fact that my very identity….my passion…my ministry….the way I took care of my family…. has been stolen from me.  You can read the whole first half of my blog to understand this.  My blog used to be called SharATreat.  It was all about baking and cooking and food.  But now I can no longer stand in one spot longer than about 10 minutes. Which means I might be able to fix a box of mac & cheese or a smoothie or a PBJ on a good day. I’ve also been wrestling with what I’m supposed to do now.

What AM I supposed to do now?!?

I mean as far as ministry is concerned? I used to bake for my ministry.  So God and I have been talking about what I should be doing.

So He showed me Ephesians 4:1.  Here’s what it says in the Message:  “I want you to get there and walk – better yet, run! – on the road God called you to travel.  I don’t want any of you sitting around on your hands.  I don’t want anyone strolling off, down some path that goes nowhere.”

Uh…ok.  If that’s not a smack in the face, I don’t know what is. First of all, I know I won’t be running anytime soon and that walking is a real challenge even on good days, but this still resinates with me. Especially the part about sitting around on your hands.  When I read this I could literally almost hear God whisper: That means you, Shara. You can still write with your hands. The RSD is not in your hands.  I can use your hands. It’s time to start writing again.

And get this… I’m talking to Mike about this and Ephesians 4:1-4 are the Scriptures he’s using in his ministry this year.  I had no idea.

But God did.

I’m still not 100% sure where I’m supposed to go with all of this, but I do know that I’m supposed to start this blog back up. If nothing else, I can just share what’s going on in my life and what God is doing.  And hopefully I can share a few pictures and if I’m feeling up to it, a recipe or two ;0)

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sharAview #1

I’ve been struggling with what to write.  I want to share with you, but I’m often at a loss for words. Dealing with a chronic pain disease, there are many times that one day seems to blend into the next day…

So, I thought I’d do something a little different and share with you a view from my eyes…images that I’ve captured throughout my week.

You may also notice that my background and image at the top of the page has changed 🙂

I found out quite awhile ago that orange is the color of RSD awareness, and I thought that these changes of my color design could bring some awareness about this crazy thing called RSD.  It’s wonderfully cheerful for such a blah thing to deal with everyday.  I adore Gerber Daisies…and the fact that they come in the color orange…beautiful!

So…here’s my first installment of “sharAview”

Discovered that my hair has turned curly…interesting

Maggie & Cowboy Woody Snuggling

We found a home to rent! WooHoo!

Some “perty” flowers from our yard

My new summer colors…RSD Awareness orange!  This is my left foot, obviously…lol.  Even though I was able to paint my toenails on my right foot, there’s no way I’d be touching it like this or wearing a sandal…that would be tooo painful!

My homemade Shara’s White Chocolate Chai Chiller…mmm

And one more pic of these amazing flowers. Lilacs are another one of my favorite flowers.  I’m not a big fan of purple, but the smell of these beautiful flowers floods me with wonderful memories of an innocent childhood. And I just discovered that these were growing along my fence-line a few years ago.    God is good…all the time.  Amen?!

Keep Hoping!

Shara

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