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Posts Tagged ‘rsd’

I want to paint you a little bit of a time line…

In the fall of 2009, I had an opportunity to start babysitting. Since it wasn’t really my forte, I really had to pray about it. And after doing so, I knew it was going to benefit both families. Lo and behold, I ended up falling in love with the little girl, and I began to realize that I was actually making my own money for the first time in a looong time. I kinda blew it on silly stuff the first couple of months, but then I decided I wanted to save it for something big.

I wanted a new mixer.

Not just any new mixer.

A nice big, shiny, new RED, professional grade KitchenAid mixer.

Yeah, Baby!!

So, I started saving all my babysitting money and I got my beautiful mixer in March 2010. I loved her.

But then a very short month later (nearly to the very exact day, April 2010), I hurt my foot and had no idea that my life was about to be turned upside down.

July 2010: I was diagnosed with RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome) A chronic pain disease; for me, it’s located in my right foot/calf/shin area.

January 2011: Mike and I came out here to Virginia to meet some of the staff at Fairmount.

May 2011: We’re here!! We’re officially Virginia residents! However, with moving there are major costs and sacrifices that have to be made. We still own our home in Kansas and there are just a lot of expenses from the move. So, with feeling that I will never be able to bake again, I tell Mike that he can sell my Red Mixer.

June/July 2011: Ms. Rose Williams buys my precious Red Mixer. It was heartbreaking for me. I knew that I was willing to give it up. I knew I wasn’t going to use it anymore. It was just sitting over there on my cabinet….brand new….taking up space, and we could get a decent amount of money for it since I had only used it a couple of times. But when it actually came time for Mike to pack it up and take it away…I shed more than just a couple of tears. This Red Mixer epitomized my entire love for baking, and with it going away, so was the realization of me never being a baker again. RSD is a beast of a disease.

Fall/Winter 2011: RSD continues to get worse and so does my depression and anxiety. I really just don’t know what to do or where to go with my life. I really feel like I’m in the deepest darkest whole.

January 2012: Mike and my mom encourage me to start going to counseling. I go and for the first time in years, there seems to be a small ray of light and I finally feel like I’m going to be able to crawl out of this dark whole I’ve been living in for the last few years.

March 2012: It comes up in therapy that I truly would like to bake again, but I no longer have a mixer. My therapist encourages me to be bold and just ask Mike for a new one. I’m a little nervous. It took me a few months to save up for my Red Mixer. It was professional grade. Oh, well. I can be happy with just a regular KitchenAid. At least my love for baking is back and I want to be in the kitchen again! So I get my bold on and ask Mike. He, of course, says “sure!” So I start looking on Amazon and letting him know what the prices are now.

I decided I wanted to make pizza. Every Thursday is our Pizza Night. Before my RSD, I always made homemade pizza…and the kids love, love, loved it. Now….we order it from Primo’s. It’s great pizza, but I still like my homemade pizza. So, for the first time in almost 2 years, I want and feel like I can make homemade pizza. I even tell Mike that I think I can make it without a mixer….that’s how bad I want to be in the kitchen…to make this pizza. So, I’m getting some ingredient stuff together and I hear Mike come in the house behind me. Then I hear him taking something out of a box…I turn around…

It’s a new Red Mixer!

But I start looking at it and it isn’t brand new……

Wait a minute….

This is MY Red Mixer.

Mike tells me that he ran into Ms. Rose Williams the day before, telling her how I’m wanting to bake again, and she says,

“Oh, yeah…..I’ve got Shara’s mixer! I was saving it for her for when she was ready to bake again, because I knew she would want to bake again.”

Ms. Rose bought my Red Mixer from us only to hold it until I was ready to bake again.

Ms. Rose is an angel.

I just couldn’t stop crying.

I hugged my Red Mixer for a long time.

And then I made some awesome homemade pizza.

I love my Red Mixer, and Ms. Rose, and how great my God works.

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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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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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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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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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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!

❤  Shara

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A new low

I don’t have a whole lot of hope to share today.  I’ve really been going backwards since about 2 1/2 weeks ago, when I tried on that shoe.  Ever since then, I’ve not been making any progress in Physical Therapy and I’ve been walking with crutches.  I try to hobble around the house without them (since we live in a tiny home), but even that is limited.  After a short time of walking without the crutches, my foot gets red, swollen, begins to sting and feels like it’s about to break, especially around my ankle.

I couldn’t take it anymore, and called my pain management doctor.  I had the appointment this morning.  I was in terrible pain before I even got to the clinic.  I was trying really hard to not cry.  I told him all the pain I was having and he told me to quit physical therapy, he upped the dosage on my Percoset (from 5mg to 10mg) and told me he wanted me to try Lyrica for nerve pain.  He told me there is another nerve medicine, but it’s notorious for weight gain, (and I already struggle with my weight), so we agreed on Lyrica.  I’ve been warned about this medicine, from others, though, so I’m starting it with apprehensions.  And that was it.  He wrote me the scripts and sent me on my way.  I was crushed as I left his office.  I was hoping for something more.  As I was waiting in the clinic pharmacy, I was squirming from the pain, and trying not to cry.  And then I went to pay for my new medication.  Whoa.  The price took my breath away.  After finally getting into the van, I just sat there and cried.  And cried.  And cried some more.  Then I remembered that I needed to go back up to the church and pick up Clark (our very sweet friend and church secretary, Maxine, was watching him for me).  And I cried all the way to the church.  And I fell apart when I saw Maxine.  And I fell apart again when I saw one of my best friends, Cindy.  I never cry in public.  Never.  Not like that.

If I’ve ever really contemplated suicide, it was today.

The pain, the expenses of all the doctor visits & physical therapy & medication & devices, the worry my family goes through, the extra burden I am to all of them.  I seriously was thinking it would just be better for everyone if I wasn’t here.

But then as I drove into the parking lot of the church, I saw my sweet little man running around in the yard with some of the other preschool kids and then I saw my beautiful baby girl outside for recess with her friends…smile and wave to me, mouthing “Hi, Momma!”

I could never really follow through with suicide.  But man, it’s been a real low today.

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