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Posts Tagged ‘crps’

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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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 ūüôā

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 ūüôā

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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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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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Things have changed

When I started this blog, my intention was to share my love of baking with all of you, and throw in some “treats” about my family. Oh, and share a little about my struggle with depression. Thus the name, “shar A treat”. (also a play off my name :D)

Little did I know that a few short months after starting this blog that my life was about to be turned upside down.

Little did I know that I would be diagnosed with a chronic pain condition and that everything I knew about my life was to be forever different.

I’ve struggled the last week or more about what to write….this disease is crippling. You know when God talked about hell being like wailing and gnashing of teeth….I’m pretty sure He was talking about RSD. After doing some more research on RSD, I found this pain scale:

Did you see what’s at the very top? ¬†RSD. ¬†Yep…it’s the highest on the pain scale. More than childbirth. More than cancer pain. More than a broken bone.

So, I haven’t written anything. I’ve been silent. I mean, I haven’t been baking or cooking because I can only stand for a few minutes at a time before my foot turns completely red and swollen. And if I’m not baking, then I’ve got nothing to share. ¬†Right?!

So, I’ve been doing a lot of praying. Asking God a lot of questions. Questions like…

Why me?
Why is this happening to my family?
Doesn’t Mike have enough to handle?
Would life for my family be better without me? Then they wouldn’t have to take care of me or worry about me.

And after a lot of these questions to God and lots of tears, I began to hear God’s still small voice.

You do have something to share.

Not what you had originally planned, but I’ve got something more.

It’s not about you.

It’s about Me.

So, I’m back. ¬†I’m sorry that it won’t be about cooking or baking. ¬†I know I’ll probably lose some of you because of changing my theme about baking, but that’s okay. ¬†From here on out, this blog will be about the struggle I have with RSD, the pain and frustration it causes our family, but the hope that there is Something bigger. ¬†That God is bigger. ¬†That He is my Hope.

Welcome to shar A hope

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Well…..

I went to see 2 doctors today.  Our family doctor and the podiatrist.  They both gave me the results of the MRI.

I don’t have any fractures. ¬†I don’t have any torn ligaments or muscles.

I have nerve damage.

And here’s the short of the long of it:

I have what is called Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome.

I don’t even really know how to describe it except that it’s extensive nerve damage as an indirect result of spraining my toe three months ago.

It’s chronic and there is no cure.

Only pain management.

And insult to injury, this often leads to depression.

NOT what I wanted to hear today.

Uh, hello?!  I already deal with depression!

Needless to say it’s been a rough day…emotionally and physically.

If you want to try to figure it out you can go to this site: RSD/CRPS

For those of you that know Dr. David Paine…this is what he deals with, too. ¬†And he’s already seeing what he can do to help me in this journey.

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