Not just fibromyalgia!

3 insignificant words yet together they mean the world to me!

 

Since my diagnosis of fibromyalgia over 15 years ago, it seems doctors want to blame everything on it. It's like fibromyalgia becomes anything & everything to these doctors. I don't fit the normal expected patient on anything. None of the fibromyalgia meds work on me. I have weird symptoms. I get weird tests results.

 

I've had doctors that were convinced I had thyroid issues after examination & then tests all come back normal so it's just my fibromyalgia. My doctors were convinced I had MS 1 1/2 years ago but because MRI & spinal tap were clear, it's just my fibromyalgia. I'm at a point of wanting to give up on doctors...

 

Then yesterday I had a doctor's appointment with my primary doctor. For almost 2 weeks, I have had constant body-wide tingling, numbness & other nerve symptoms. I've also felt weak, like I could fall. I was so nervous about my appointment & was convinced I was going to get the "it's just fibromyalgia" line.

 

We talked about my numbness & weakness. He was concerned about my blood pressure being low so he adjusted my meds. Then he tested my strength. I really thought I felt weak because my legs/feet were numb but I couldn't even push his hands up with my legs! And he was easily able to push my arms down.

 

Then my doctor said those 3 words - "Not just fibromyalgia!" He is really concerned about the weakness. He's hoping it's something simple like a vitamin deficiency or anemia or thyroid. But he's going to keep looking till we figure it out. I go back in 3 weeks.

 

I don't want to have actual weakness. I don't want to have something else wrong with me, but I'm relieved to know that I was right! It is more than just fibromyalgia! Once we figure it out, then I can work on a plan for dealing with it! It's always easier when you have a diagnosis. The not knowing can drive you crazy as you go through all the "what ifs!"

 

So for now, I take it easy. I need to stay aware of the weakness, just go with the numbness & keep a positive outlook. I need to be thankful for what I can do! God will carry me through & give me the strength to deal with whatever diagnosis comes my way!

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Bam! One minute feeling good...

Then the next your symptoms over take you. This is life with a chronic autoimmune disease! It's enough to drive you to the edge of sanity.

I'm blogging this so I have a record of it. Sometimes the details blur & it doesn't seem so important later.

Today I was feeling fairly good. I was enjoying worship at church. Suddenly my whole body gets this tingly weird sensation. This was immediately followed by a heaviness. My body suddenly felt like it was lead! I sat down thinking it would pass rapidly. I don't remember much of the sermon as even my mind felt heavy. After church I walked out but felt weak & my limbs felt heavy. I was afraid I would stumble & fall. Hubby said I looked ok, just a little tired & stiff.

I felt a little better after walking to van & was able to go to lunch. Lunch seemed to give me energy & I was able to drive home from dropping Hubby at airport.

About 4 hours after this episode started, I suddenly felt very fatigued. Fortunately we were back home. I took at 3 hour nap on couch. I'm still feeling very exhausted & my body is tingly/numb all over. I'm also having some burning sensations & pin pricking sensations.

The numbness/tingling is something I've been dealing with for the past year or 2. But the heaviness was a new symptom. It's all kind of scary & my mind keeps wanting to go to all the "what ifs" that fill my mind.

Supposedly, according to my neurologist, this is all fibromyalgia symptoms. But after living with it (fibromyalgia) for most my life, this sure seems like something more...

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Fear

By [the help of] God I will praise His word; on God I lean, rely, and confidently put my trust; I will not fear. What can man, who is flesh, do to me? (Psalm 56:4 AMP)

THE Lord is my Light and my Salvation--whom shall I fear or dread? The Lord is the Refuge and Stronghold of my life--of whom shall I be afraid? (Psalm 27:1 AMP)

Fear! It's the one thing we all struggle with, some of us more than others!

When I was little, I feared people. I was shy. Then I feared the reaction/responses of people. So I became a people pleaser! At age 7, after a stint in hospital, I feared relapsing & never walking again. As I got older, I feared public speaking so much that I threw a science test so that my GPA would slip enough to put me in 3rd place in my class. I did NOT want to make a speech at graduation!

I lived with fear for almost 3/4 of my life so far. Then God got my attention! At age 27, I was bedridden & in excruciating pain. The doctors couldn't figure it out & couldn't take the pain away. In the middle of the long dark nights, I had to face my fears! I might never walk. I would most definitely disappoint & let people down.

Many times, God brought me to the verses that said "Fear Not!" TV preachers taught on fear. Books I read talked about fear. As I got better, I continued to hear, read & study about fear.

I had to come to a point where I had to choose...am I going to live in fear or am I going to trust God to protect me & provide all my needs??

I decided to trust! What a freeing decision! It didn't come easy. I had some moments of fear & times I had to remind myself to let go & leave the detail to God.

It is amazing what God has done for me & through me. By letting go of my fear, I am able to live in the moment. God has given me freedom from seeking the approval of others. If I'm living the way God wants me to, then I don't need to worry what others think. Comparison is the ultimate fear-inducer & a sign that I'm thinking too much about myself.

I'm amazed every time I am able to talk in front of a group without trembling in fear. I'm amazed every time I can call someone & actually talk to them. I'm amazed every time I can leave my house to travel & not be in constant fear something will happen why we are gone. I'm amazed that I can listen to the news & not completely freak out. I'm amazed that I can take life one day at a time & really enjoy it.

We have an awesome God! I'm totally amazed at how much He loves me. The freedom He gives is life changing! He died on a cross for my sins! I'm an imperfect, selfish, sinful person. I deserve death & punishment. But Jesus came & gave His live for me. He WAS perfect, blameless & yet He took MY sins! But His death was not the end. He defeated death! He rose again! Why? Because He loves me. Because He loves you! Just pray & tell Jesus you want Him to be Lord of your life, forgive your sins & free you from death!

Then ask Him to free you from fear! Be prepared to be amazed at the changes He makes in your life & the freedom He gives you!!

 

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My week at camp

We serve an awesome God who is able to do more through us than we can even imagine! He can enable us to do things we really wondered if we would be able to do. "I can do all things through Christ who strengthens me." -Philippians 4:13

It all started May 6th when Justin Williams sent out an email to parents stating we needed more chaperones for the youth SpringHill work trip. For 6 days, I wrestled with God over this. After all, I have fibromyalgia & have been dealing with a flare-up of nervous system symptoms. Some days I can barely walk & spend lots of time on the couch. How could I work at camp & do all that walking? How could I sleep in a cabin & be able to move the next day? Plus, I didn't know very many of these teens. These were all legitimate concerns, but it came down to one question. Would I trust God to work out all the details, obey Him & go to camp? So on May 12th I told Justin I would go!

On Sunday, June 2nd, we loaded my van & several cars & headed to camp. I was dealing with hormone issues as well as a headache & numbness. But our God is awesome! He gave me an calm attitude & I was able to just go & do!

Monday was our first work day. I led a kitchen team. We worked from after breakfast until after supper with just a few breaks. Unfortunately, I OVERDID! I know, not a big surprise. I tried to work too much & not just supervise. By the end of the day, I didn't know whether I would make it through the rest of the week. Our youth group leaders, Justin & Debby, saw how I was feeling & got after me. They told me to slow down. They also took the after supper responsibilities from me so I could rest!

After that, I slowed down! I took more breaks, let the youth do most of the work & really started enjoying the week. I'm amazed at how much the kids wanted to serve. When I stepped back, they stepped up & filled in all the gaps. My crew did better when I let them own the job & I just supervised!

I still hurt every night. I had to take muscle relaxers every evening. But my attitude was in check & I actually enjoyed the teens. God just gave me a peace about it all. He gave me the strength I needed. I came away from the week renewed in my spirit, in awe of my Creator & with a new view of teenagers.

Our youth group

So don't let your health limitations hold you back from doing something God calls you to do! He is faithful & He will provide!

 

 

 

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God is Faithful

As I've been struggling a lot with my health recently, God has been reminding me more & more of His Faithfulness! The following video has become a new favorite of mine. It's called "Never Once" & it's by Matt Redman.

Many times, we walk through trials that overwhelm us. Yet when we stop looking at our trials & look up, we see that God has been there all along! He never promised us an easy life. But He did promise that He would walk with us through each & every trial.

I've been through many trials, especially in regards to my health. I can testify that Jesus has been faithful! He walked with me through the darkest nights. Because I've seen His faithfulness to me, I know He will carry me through whatever the future holds!

Come to Him! Cling to Him! He is faithful & will see you through each & every trial! It may not be the outcome you want, but He will be with you every step of the way. God is Faithful!!!

 

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Nerve issues

Seems like every time I post, I'm struggling! This post is no exception. Of all the symptoms I deal with, the nerve issues are the worst. The numbness, tingling, pin prickles, creepy crawlies & burning sensations are so "unnerving"! I've dealt with them in my legs due to pinched nerves or in my hand due to carpal tunnel.

But these body wide sensations are driving me insane. There is nothing I can do but endure them! Not only do the sensations bother me, but all the "what is wrong with me" thoughts... This has to be more than fibromyalgia!

So I'm biding my time till Hubby's new insurance kicks in. I'm praying I don't go insane! I'm praying that some totally worse symptom doesn't kick in, especially when it's just me & kids at home. I push through... It's all you can do!

I keep reminding myself that NONE of this is a surprise to God! He knows exactly what is going on with my body. I cling to the fact that this body is not forever! One glorious day, I will have a new, perfect body just the way God intended. I yearn for that day, but until then, I keep clinging to Jesus! He carries me through! He endured far worse pain than I when He was beaten & bruised & killed for my sin! He sympathizes with me & comforts me! Praise God!

So I carry on! I endure this thorn & look forward to the future!

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FMS vs MS vs my symptoms

I have a friend who was recently diagnosed with MS. We've both been fascinated with how alike our symptoms are. So I decided to compile a list of symptoms for both diseases. It's very interesting. Below are the results complete with my symptoms too. I don't have all these symptoms at the same time. Some of them come & go.

 

 

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