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.

You Are For Me

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

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.

Sunshine

There’s sunshine today.

That is my blessing today.

And I can see that it’s very windy out there…it’s reminding me of Kansas, and of home.

I want to be honest on here.  So I’m going to tell you that with starting to write again has really brought a lot of emotions the last few days. I went back and read through several of my past posts leading up to my diagnosis and us moving to Virginia and then when I just abruptly quit writing.

So many emotions.

There’s been quite a bit of tears the last couple of days.

And a few too many cookies eaten.

Yeah….I’m an emotional eater.  I hate that.

But there’s sunshine today.  That means hope to me.

And if any of you deal with depression, you know what I mean.  You long to soak up that God-given vitamin D, to bathe in His warmth.

I’ve decided to share this blog with my new family at Fairmount, so I may be having a lot more people reading about me and my family.  And for some reason, this has brought on some weird emotions for me.  I want to share myself with others or I wouldn’t have started this blog, but knowing and willingly opening myself and my family up to a new family is….well…honestly…a little scary.

But I gave this blog, this journey up to the Lord when I decided to write again. And I know that this is what He wants. It’s what I want, too. I’m not able to get out to go to church on Sundays or to other church activities, and I want my new church family to get to know me. And even though it’s been rather dark and rainy (literally and emotionally) the last couple of days:

there’s sunshine today.

“Oh, how sweet the light of day, and how wonderful to live in the sunshine!”

Ecclesiastes 11:7

The Message

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)

VA Bound-Day 2

Our day started quite relaxing. We took our time having breakfast, letting the kids swim, and then getting ready and packing up for the rest of the day’s drive.

We drove to Edwardsville, IL to see Mike’s brother, Matt, and his family, and to drop off Maggie Girl, our 4-legged baby. She will be staying with Uncle Matt for a couple of months until we can get settled in to our new place and get arrangements made for her to come live with us. It’s another goodbye…and I’m really starting to hate goodbyes. However, we all handled it really well.

The next leg of the trip “seemed like about a 1,000 hours”… to quote Reagan…lol! But she’s right in the fact that it did seem to take forever to get here in Louisville. I’m not entirely for sure why b/c we only stopped once after being at Matt’s house, and that was for the routine food, potty, and gas-fill-up stop. Oh well, point is we were very glad to finally get into our hotel room. But there’s some bad news…Kentucky state regulations say that a public pool can’t be open unless there’s a lifeguard on duty…and they don’t have lifeguards on duty until 2pm…after check-out time. Man, were the kiddos bummed :0(. I mean, that’s the bestest and most funnest part about staying at a hotel, right?! Well, it is according to my kiddos. So, Mike found some brochures about stuff to do around here, and I think they’re going to go to the Louisville Slugger Museum tomorrow morning, and then we’re going to travel less hours tomorrow so that they get plenty of swim time in at the next stop.

Oh, and one more thing before I go to sleep. I had to change the clock on my phone just a few minutes ago…you know, b/c we’re in a different time zone. And then it just slapped me like a wave of cold water all over again.

I’m setting my phone to another time zone. Permanently.

And another trickle of tears spilled over again.

I’ve never LIVED in another time zone. Ever. Never Ever.

Yeah….I’m being the bravest & the strongest that I can be b/c I know for sure that the rest of my family is tired of seeing me cry and I don’t really want to let on how much this trip is affecting me physically But what I really just want to do is lay down, curl up with my soft electric blanket and my big mint green body pillow, and sleep & cry it all out for about a week. Then I’d be ready to move forward and truly be ready for our new life.

I think. I hope :0)

Here’s just a couple of picks from this morning:

Eastward Bound

I’m starting this at exactly 11:11pm tonight so this will be short.

First…I miss you all so much so that my heart is literally still aching from the ripping apart as we left the church parking lot this afternoon. Surely you heard that awful sound, right?!?

Well anyways…we made our first stop at Kansas City for a quick hamburger, and then I couldn’t resist the Krispie Kremes. I mean you can’t ignore the red blinking light letting you know that there are hot fresh donuts screaming your name, can you?
Well, I couldn’t at least…:0)

And our second and final stop for the day is Columbia, MO. We are staying at the Drury Inn, and our room is poolside. The kids were so excited, but I made them take baths instead (I’m a mean Momma…lol), but that’s what happens when everything gets packed so fast. They’ll get their pool time in the morning. Plus Mike’s voice is almost completely gone, and I know he’s exhausted and on the edge of being sick. You can only go at that pace with big time stress and with little sleep for so long. In other words, it’s catching up with him. He keeps telling me his completely fine, but I know it’s b/c he doesn’t want me to worry about him.

Well, I’m going to close with just a few pictures. I’m having a hard time staying awake, especially now that it’s completely dark in here, and very quiet…except for the fan going….zzzz

Uuuuuhhh yeah…what? What happened…huh? Ok. I’ll put the pics up before I fall asleep ;0)

So…Virginia Bound-Day 1 is complete.
I truly love you all!

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

What a week!

This week has been a week of drama…

I had two medical appointments this week.

The first appointment was with a neurologist.  I was very nervous.  For one, it’s just another doctor to explain all this crazy RSD to.  Secondly, I had actually seen this doctor several years ago after I had damaged my left arm during a mission trip to Mexico.  I didn’t really remember much about him, but I definitely remembered the horrifying experience of living through nerve conduction and muscle testing.  I was just praying that wouldn’t happen again.  I didn’t even have the excruciating RSD pain back then. I did visit with this new doctor and to our surprise, he was very curious about the RSD and really wanted to help me.  He had worked with a few RSD patients, and informed me that I had it bad (lol….glad someone agreed with us on that point!), and that it was a very rare thing for it to have developed from stubbing my toe (another point we agreed on!).  He then decided that he really should do the nerve and muscle testing.

What?! What?!  Surely not….

Ok…well, he needed to see if there is any nerve damage.  I understand.  At least this guy is actually doing something, right? I mean there’s been virtually no moving forward with this disease since my diagnosis last July.  My pain management doctor actually seems to be at a loss…which is why he referred me to the neurologist. So, well, ok.  I don’t know if I can handle it, but I’ll try to be strong.

So, I ask the nurse when we’re going to do this thing (the torture).  Right now, she says.

What the ……..?!?!?!

After she had me sign the waiver and she walked out, I literally looked at Mike and then put my head down on the table/bed thingy.  I didn’t realize they meant to do it right then…that day.

So, I dig as hard as I can find within myself to move forward to the next room where they are to do the testing.

I won’t go through what happened after that.  Let’s just say there were electrical currents and needles and a whole lot of crying that ensued.  And then, I was told I needed to go get some blood work done afterwards….more needles. Great.  So, after blood-drawn from both arms and seven (yes, 7) vials of blood later, I was completely emotionally and physically done.

It was a very tough day.

I had another appointment on Thursday b/c this neurologist wanted to see how my veins were responding.  So, I had an ultrasound done on my leg.  It was uncomfortable, but NOTHING like what had happened the day before.  I thanked God for that small blessing.

The neurologist also started me on a new medication called Neurontin…a nerve pain medication.  I’m hopeful this will begin to help with some of the nerve pain. And I truly am hopeful that something good will come from these tests.  I’m hopeful that there will be some answers to this crazy RSD.

Well, in other news…Mike left e.a.r.l.y. Friday morning for his flight to Virginia.  He has had an action packed weekend of meeting new people, going to several youth activities at Fairmount, and (the most important to me…lol) looking for housing.  Still no word yet on that front, but he’ll be looking more tomorrow, and I pray that something will turn up

Since he was gone, my dear friend Kris offered to bring over a meal…which was a yummy Tator Tot Casserole, some fresh pineapple, some homemade rolls (man, I miss fresh homemade bread!!!), and these oh.so.yummy Easy Apple Dumplings.

Oh my….those are just sinfully delicious.

She also insisted on doing my dishes.  Which doesn’t sound like a big deal, but I’m still struggling with pride and letting go of “my” kitchen.  It’s been my domain for the last 13 years, and letting someone else do my dishes was difficult.  Very difficult.  But I’m also profoundly thankful that I have a friend who would do that for me.

Kris….I love you, so much.  My tears were not just of prideful embarrassment, but also of true thankfulness.

You truly mean the world to me!

And that my friends, brings me to today.  I’m thankful it’s the start to a new week.

And new hopes!

<3  Shara

Knock, Knock

Hello?

Knock, Knock….

Is there still anyone out there?

As you can tell from the last post (from back in October), my life has been turned upside down.  It’s now been 6 months….6 long scary months since we last visited.

And not a lot has changed, except for one big thing.

We are moving.

To Virginia.

See that little red “A” marker on the map below.  Yep, that’s where we’re moving.

Man, that’s a long ways away for this Okie…whose never lived farther than 5 hours from her Momma.

But when your in the ministry…you go where God has called you.

And you get this really strange peace about it.

Oh, I’ve shed my fair share of tears.  And I’m not done.  We are moving away from blood family.  We are moving away from our Crossroads family.  It’s scary and exciting all at the same time.

There’s lots more to share, but my foot can only handle being away from it’s pillow and heating blanket for so long.

So I’ll be updating a little more frequently.  I can’t express how deeply sad I am that I can no longer bake and cook like I used to.  I can barely stand up long enough to fix ramen noodles.  But I think there’s more out there that I can share about, right?  Right!!  And I’ve still got all my other recipes from last year.  I may even just blog about the recipes I never got around to sharing, even though I can’t make them anymore.

Man, I’ve missed you guys!!

Shara