Another update

It's been awhile since I've posted. Since I've had no answers, I really didn't feel like posting. I had my MRIs several weeks ago & was supposed to see the neurologist last week. His office cancelled that appt & couldn't see me until Nov 4th. We called back & stressed that I needed to be seen before that, so I saw the nurse practitioner today.

The good news is that my MRIs are clear. So no MS! There is some arthritis in my cervical spine but according to them it is normal changes with age. They feel that the numbness/tingling is my fibromyalgia. She did listen to my concerns about the weakness/feeling off balance. I also stressed that I'd like to get back to walking, but fear I might fall.

After some testing in the office, she ordered an EMG with NCV. Confused yet? :-) An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. Nerve conduction studies measure how well and how fast the nerves can send electrical signals. They will compare these to the studies I had done 1 1/2 years ago to see if my muscles are actually weaker or if it's a nerve signal issue.

After these tests, she said I'd probably be sent to physical therapy. She's worried about me falling and urged me to be extra careful until then. She also was concerned that my BP was high. I think it's just the stress over this, but have message in with my primary doctor. Oh & she also asked my primary doctor to up my Effexor. She felt it might help alleviate some of the nerve symptoms. I felt like it was a productive appointment. No real, definite answers but movement in the right direction.

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I'm gonna be alright!

I've been struggling a lot! Anytime you don't know what is wrong with your body, you struggle. It's always a roller-coaster of emotions.

I went to my regular doctor who confessed to me that he has no idea what is going on with me. He said we will wait to see what the MRI shows & then go from there. It was refreshing to have my doctor admit I have him stumped.

Last week, one of our elders at church preached about giving thanks & praise to God! This week, one of our missionaries, Dave Weston, preached on prayer! We need to become prayer warriors! We need to become impudent people who are so impassioned for Christ that we become people of prayer! Through these 2 sermons, God has laid it on my heart that I need to use this "down" time more effectively. I need to pray more for all those around me.

I was also blessed today after church by 3 wonderful, lovely ladies who came over to me & prayed over me! I didn't feel any different physically, but wow! My mood was lifted & a feeling of peace washed over me! I felt God whispering to me "You're gonna be alright!" I knew at that moment that no matter what the diagnosis, I would be alright! None of this is a surprise to God. My prayer is that whatever the diagnosis, whatever I have to go through, whatever obstacles I have to face, God will carry me through & He will be glorified through me! I pray it will be obvious that I could not get through this current health challenge without God's strength & God's Grace!

 

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Struggling!

Let me start with the more positive stuff. I had my neurologist appointment that my Hubby set up for me after all my bloodwork came back mostly normal. I know nothing new yet, but I'm scheduled for a brain MRI & cervical spine MRI at the end of the month. Hopefully in 2 weeks I'll start getting some answers.

Now to my struggles. I have to say that I'm doing fairly good coping with the physical symptoms of numbness, tingling, pins & needles and burning. The weakness, on the other hand, is causing me some struggles.

Walking slow because I feel unsteady is the worst. I've always been able to walk through my symptoms. Now I'm struggling to walk across a room without something to hang onto. When I do have something to hang onto, I wear out very, very quickly.

From the outside, I look okay. I have put on some more weight (which is part of my struggling), but I don't look sick. It's the hidden things that make it hard. I get overstimulated easily which makes a roomful of people hard, or even just my kids all talking at once. My brain works slower than normal. A simple thing like taking sermon notes becomes almost impossible because my hand can't keep up with my brain which can't keep up with what I'm hearing. I'm finding my spelling skills have deteriorated. My vision is blurry a lot of the time & I sometimes feel off-center.

I'm only 42 (almost 43), but I feel like I'm 80! I hate that my kids are worried about me. I hate that my kids have to fix their own meals many days. I hate that I'm at my highest weight ever (even higher than my full term pregnancy weight)! I hate that i feel ugly because of this & because all my clothes feel tight & small! I hate that my Hubby has to worry so much about me. I hate that my Hubby has to carry much of the load around here when he's home from traveling. I hate that my parents have to come up & help me when I should be helping them! I hate that I don't know how to let my friends help me even though lots of them have offered. I hate that we (my family) can't do a lot of things because I don't feel up to it. I especially hate that I don't know yet what I'm fighting so I don't know HOW to fight it!

So for now, I have a good cry then just try to get through each day until I have answers. I try not to give in, not to play the what-if game, and not to dwell on myself too much! I'm so blessed & have so many who love me. I KNOW God is in control & there is a reason why I am here & going through this. But even though I know this, I still waver. I still put my eyes on myself & my problems. I still struggle! So pray for me! And let me know how I can pray for you.

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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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